Pharma Influencer Marketing: Making the Case

Every day, more pharmaceutical brands are hoping to see the same outsized business results that other industries have found in influencer marketing – but pharma faces challenges far different from any other industry. How can pharma brands share control with influencers to build patient trust and engagement? How does trust translate to ROI?

In our most recent Quarterly Landscape Report, WEGO Health analyzed responses after surveying 263 of our members across 86 conditions to uncover patient influencer perspectives on influencer trust, action, attitudes toward pharma promotion, and partnership preferences.

Influence of Lifestyle Influencers versus Patient Influencers

Lifestyle influencers invite their followers to get a glimpse into their picturesque lives, revealing many aspects of their personalities. They typically share multiple talents or passions, like fashion, home décor, travel, and family life with their followers. To earn the title of “influencer,” they typically have large followings on the macro (10K – 1M followers) or mega (1M+ followers) level. They are masters at their craft, churning out beautiful content on multiple platforms, with the most popular earning a comfortable living on paid partnership income. While lifestyle influencers numbers have been on the rise over the last decade, they did not focus much on health issues such as living with medical conditions and taking medications until much more recently.

Because personal health journeys are a newer addition to the parts of their lives influencers share with their followers, there is great skepticism on the receiving end. “I’ve been following you for years, so why am I only hearing about your debilitating migraines now?”

On the flip side, health issues and medical conditions are the predominant focus of a patient influencer. Sure, they sprinkle in lifestyle content occasionally, but looking at the feed of a patient influencer, you mainly see their journey of living with a medical condition(s), inspiration and support for others, and documented experiences with medications and therapies. In a way, managing their condition often is their lifestyle. The pictures aren’t always pretty and the content doesn’t share only the highlights, but it’s real, raw, and authentic.

While there are patient influencers out there with sizable followings, the vast majority tend to fall more within the nano (1K-10K) to micro (10K-100K) categories. Their content is tailored specifically to their audience of patients living with or caregiving for their condition(s) versus the general population, and the smaller and more niche their condition, typically the smaller the reach of the influencer. By and large, they are not living off of the income they make as an influencer, but hustling in many forms from consulting as a patient in addition to full-time jobs to earn a living — all while still devoting many hours to the communities they manage and inspire. But don’t underestimate their impact. Nano and micro-influencers have greater, more impactful engagement with their followers and a well-established foundation of authenticity and trust in their communities.

While the patient influencer is a relatively “new” phenomenon to be brought into the healthcare industry spotlight, these folks have existed for over a decade. It’s only in recent years that they’ve started to gain notoriety among marketers for the value that they can bring.

So the question is, when it comes to health information, who is trusted more, patient influencers or lifestyle influencers?

NOTE: For our research and analysis, WEGO Health surveyed our Patient Leader Network members who are both patients and, in many cases, patient influencers themselves to varying degrees. Within our network, we have advocates, activated patients, and influencers as members, and in digging into the data in this particular survey, we saw a 50/50 split between influencers and activated patients. Regardless of their personal “influencer” status, these people are patients first, and their perspectives on who they trust are more critical to analyze than perspectives of those in the general population. They represent the communities brands aim to reach and provide the best insight into the psychology of the patient mind.

According to our research, patient influencers handily win in the battle of trust. Exactly half of the respondents did not or only slightly trusted information shared by lifestyle influencers and only 14% felt that they could mostly or completely trust the information shared by lifestyle influencers in a sponsored ad or post. On the flip side, only 17% of respondents did not trust or only slightly trusted patient influencers. Over half (51%) mostly trusted to completely trust the information shared in a sponsored ad or post.

Lifestyle Influencer versus Patient Influencer Trust Factor Graph

Qualitative insights survey data we collected in the fall of 2020 shows that authenticity plays a big role in this equation. While lifestyle influencers may very well be living with the chronic conditions they discuss, they don’t always have the same level of knowledge and expertise to discuss these conditions as that of a patient influencer who speaks on it daily. Combined with the fact that many macro and mega lifestyle influencers are living above the financial means of the average patient and therfore have access to different and better resources, many patients feel that they just can’t relate.

When it comes to the likelihood that an influencer drives patients to research medications, the QLS results have a similar inverse relationship as the trust factor. Half of the respondents were not at all likely to only slightly likely to research medication that was promoted by a lifestyle influencer, whereas over half were mostly likely to very likely to research a medication promoted by a patient influencer.

Lifestyle Influencer versus Patient Influencer Trust Factor

An interesting curveball in this survey was patient community influence. When asked how likely patients were to research or ask their doctors about health information heard through or promoted by others in their communities, the results were overwhelmingly positive with 64% mostly and very likely. While this organic approach is the most coveted by pharma marketers, it is certainly the most difficult to scale, which is why many brands find the happy medium to be the patient influencer as a larger disseminator of information to their communities.

Influence to action lifestyle influencer versus patient influencer

Receptiveness to Branded Influencer Marketing

So, let’s talk about the approach. We know patients are receptive to health information and medication information shared by patient influencers, but what about the straight-up “brand mention”? How receptive are patients to fully branded ads and marketing messaging?

This was one of the most eye-opening findings from our survey because as it turns out, they are more receptive than many would think. Over half of patients are somewhat receptive and another 29% say they are very receptive to fully branded marketing.

Perhaps the more surprising statistic is found when we look at receptiveness to pharmaceutical partnerships. When asked how receptive they, as patients and influencers, would be to partnering with pharma on marketing and advertising initiatives, the large majority (86%) is somewhat to very receptive.

The most important word to focus on here is the word “partnership”. WEGO Health CEO, Jack Barrette, pointed out in our most recent webinar that patients are receptive to partnerships, but only if those partnerships are a true collaboration. This means honoring the expertise and autonomy of the patient influencer. The trust of their communities and their pride in their authenticity are not factors patient influencers are willing to sacrifice. For example, being told what to post, when, and how to say it might not ring as true to these patients as would a collaborative process of uncovering pain points within their community and communicating their perspective (in their own words) on a medication’s ability to solve those problems.

WEGO Health solicited open-ended answers on this topic because we really want to understand what patients feel makes a good branded partnership. Here is what a few respondents had to say.

Patient Influencer Pharma Partnership

For those on the fence or against these types of partnerships, many responses went back to their fears of medication being a deeply personal decision, one that belongs to the patient and their care team.

At WEGO Health, we understand this is not a simple feat. Having partnered on branded campaigns with pharma, we know the intricacies of the MLR process and the sensitivities of the patient community. Standing in the middle with outstretched arms, we strive to strike the balance so that both sides see the value and reap the benefits.

Execution with Patient Influencers

When a brand is considering a partnership and they have a patient influencer on board, what are the top considerations for the brand to get it right?

Considerations for Branded Patient Influencer Marketing

Breaking these components down, there was an interesting theme that authenticity and transparency trump engagement and influence. In the world of mega influencers, many marketers look at reach as the number one criteria of hiring an influencer for their campaigns. But in the pharmaceutical and healthcare space, this is a very different landscape. Patients find it most critical that the person sharing the information is genuine and real, living with the condition, as opposed to holding stock in their number of followers.

Branded Partnerships Patient Influencers and Pharmaceutical Companies

Patient Influencer Partnership Preferences

Because many pharma brands are accustomed to their celebrity endorsers being exclusive to their brand, they often struggle to understand why patient influencers are reluctant to exclusivity.

To dig in on this topic, we asked our respondents to weigh in. Our research confirms that patient influencers are reluctant to exclusivity, with 1 in 3 respondents answering they would “never” consider exclusivity. Over half, however, are okay with exclusivity, but only for a finite amount of time.

But why? Patients want to remain unbiased. As their conditions change, so often do the therapies that they take. They do not want to be held to agreements that do not allow them to mention, explore or share new medications and therapies that someday they may ultimately end up needing and succeeding with. Patients also like to be able to speak freely, and promoting flat tummy tea doesn’t hold the same weight as a potentially life-changing medication. While they are happy to share their positive experiences with their community, they understand the value in remaining open. Every person has a different body chemistry and each medication or therapy, therefore, is not a one-size-fits-all approach.

Patient Influencer Branded Partnerships with Pharma Companies

Lastly, when looking into the future and what 2021 may bring, it wasn’t surprising that the majority of patients are not ready to travel. This survey was conducted in October 2020 when COVID-19 numbers were lower but even then, 3 in 4 respondents said they would not travel until cases decrease or there are proven treatments or a vaccine. But this doesn’t mean that partnerships need to be put on the back burner. Patient influencers are highly skilled at creating authentic content from within the walls of their own homes, as well as working virtually with pharma brands and companies like WEGO Health.

Patient Influencer Example High Engagement

Overall, the takeaways from our landscape research indicate that patients as influencers for brands will help build trust more so than lifestyle influencers, are more likely to increase target patient audience action, and that patients are receptive to branded marketing and ready to partner with pharma to make it happen. If you’d like to explore the power of a patient influencer campaign for your brand, we invite you to reach out to our team and explore the possibilities!

The Patient Perspective: Patient Influencers and The Impact of Authenticity

As any patient will tell you, there’s nothing like out of touch, unsolicited medical advice from companies to get them to slam the door in your face. When you’re sick and you’re trying to decide how to manage it — there’s simply nothing more infuriating than a tone-deaf portrayal of your illness in a commercial or print ad to make you feel alone, misunderstood and unseen.

Just as we demanded that women stop smiling and frolicking in fields during tampon commercials, so too do we demand a realistic representation of patients telling us how to live and cope with different diseases.

Real people, not actors has become a tagline for authenticity in healthcare. As patient consumers, we’ve become conscious of how gratifying it feels to see our stories represented as they are truly experienced. As we become veterans of our diseases, it becomes our duty to light the way for others as they have lit the way for us.

So who do patients want to get their advice from outside the exam room?

Becoming An Advocate of Influence

Like many others, I became an accidental influencer when I started sharing my story through my blog. I was writing about my highs and lows, my hospitalizations, and helplessness as I fumbled my way through a new diagnosis. I talked about the mental olympics it takes to go from being told “this is how you’re going to treat your disease” to taking an active role in planning your treatment with your doctor. I talked about leaving a place of shame and self-consciousness and asserting my voice in the exam room.

I found myself blogging about how if the patient-doctor relationship was a two-way street, we might actually end up where we wanted to go.

Across the internet, my journey was mirrored by cancer patients, autoimmune patients, chronic pain patients–and so many others. It wasn’t long after I started my blog that I was nominated for a WEGO Health Award. A company that celebrated patient leaders and their contributions to awareness, advocacy, and innovation. I found an entire network of patients like me who were utilizing their social platforms to usher in a new era of support for each other.

We were different from the influencers hawking diet supplements and fashion accessories. We were setting the bar for humanizing healthcare and by sharing our reviews, tips, and honest revelations we were creating a new breed of trendsetters: the proactive patient.

In Sickness and in Social Media

When it comes to patient influencers, it’s not the images of airbrushed and toned models showcasing glittery packaging that comes to mind. Patients who follow other patients that they respect and admire are still thinking, I want what it is that they have. It’s just not always as obvious as new kicks or flashy gadgets. How do you showcase quality of life in a 30-second video or a 120 character status?

Often it’s a patient who’s able to say, “I did find support from my doctor when I came to them with my unmanageable symptoms” or “I found the right tools to help me explain to my family and friends how my disease is making life more complicated right now.” Or simply, “I’m not coping well right now, but I’m not ashamed.”

As it turns out, social media really can be the prescriber in how to live realistically with our disease — outside the scope of what our doctors can suggest for us. And I’m not talking about recommendations of literal supplements or diets, but an example of how real diseases progress in the real world. How they touch on our school, work, relationships, sex lives — how they influence our emotions and choices.

There is a bigger story being told in the captions of our fellow patient’s feeds than we have ever seen in the tagline of a magazine ad for our meds.

Social media can give us a matrix of examples for the difficult choices ahead. These stories can help us to understand our symptoms, explore treatment options, and find our footing in a new world of unanticipated personal responsibility.

Yes, we need our medical experts, and we need support, but we also need these influencers as pivotal allies in our journey.

For years they’ve been establishing their presence across Facebook, Instagram, and Twitter, transcending the role of support group leaders and becoming influencers for their condition.

And now? They’re ready to open their eyes and @’s to collaborations with pharma.

More than Money, Patient Influencers Make Change

It has not been an easy transition for pharma who is often handcuffed by the restraints of highly-regulated industry advertising standards to partner with patients across social media.

Unlike conventional influencers, patient influencers aren’t going to receive coupon codes for their audiences or free samples of medications to try.

The most valuable “get” from their work with pharma?

“A seat at the table,” says WEGO Health Patient Leader Network VP, Julie Croner. “Patient influencers are trying to make the hardships that patients deal with a little easier. If they work side-by-side with pharma, they have the opportunity for their voices, concerns, and ideas to be heard — and to be paid for it.”

Patients who are chosen for influencer opportunities are often paid not only for their social posts, but for their participation in insight groups, one-on-one conversations with pharmaceutical marketing firms, and survey participation.

They bring key concerns from their disease communities to a forum where pharmaceutical companies can make real change.

In return, influencers open their feeds to conversations about new treatment options.

The goal is to give patients the information they need to become advocates for their treatment plans. Influencer campaigns will aim to inspire patient-doctor conversations that have both parties coming to the table with ideas on how to improve quality of life.

This back and forth can spark a proactive patient towards successful treatment and stops them from being prescribed a one-for-all treatment plan.

When asked what action they would take when someone they consider influential shares information from a pharmaceutical company about a specific medication, 87% of consumers said they would ask a healthcare professional about the medication.

Contrary to popular belief, most patient influencers don’t have an ax to grind with pharmaceutical companies. By the time they become the ones to look to, they understand that disease management involves a need for partnerships with prescribers and prescriptions. Medication keeps patients alive and functional, and while no one is a fan of unwanted side-effects or unsuccessful treatment plans — rarely do we fall into the right solution without flexing the muscles of personal medical experimentation.

The Bridge Between Patients and Pharma

So how do patients go from sharing their stories on social to collaborating with pharma goliaths? How do they retain authenticity in their messaging while expanding their personal brands and social audience?

If they were searching for the bridge between the world of patient advocacy and pharmaceutical might, they wouldn’t need to look much further than the community of WEGO Health, a vast network of patient experts, opinion leaders, influencers, and advocates who are given opportunities to collaborate on a professional level with healthcare.

Patients paid attention when the company started recognizing advocates for their contributions through their annual WEGO Health Awards a decade ago. Now the company has grown to support patient leaders in their careers as social influencers by offering free online education, databases of engaged patient leaders to connect and collaborate with, and a gig marketplace where patients can find relevant paid opportunities related to their disease communities.

The company has been a strong proponent for patients getting paid for their contributions to healthcare marketing and will only broker partnerships between patients and pharma companies if the patient makes a profit from their experience and time.

Now, WEGO Health has launched Pharmaceutical Grade Influencer Marketing: a chance for patient leaders to take the next step in helping their dedicated social audiences make smart treatment choices.

The WEGO Health Pharmaceutical Grade Influencer Marketing product offers services that include influencer marketing, social media management, branding, and photo and video production. The company seeks out the top patient influencers across all disease communities and gives them the expert training they need to kick off a successful partnership, including training on adverse events, comment moderation, and content pre-screened by both parties before posting.

With sponsored posts being boosted by WEGO Health’s proprietary algorithm, patients receive a significant boost in views and follows to their social networks — a benefit that will help them reach new audiences and expand their professional careers as influencers.

The Patient Journey Will Always be Real

While other types of social influencers may grapple with the loss of authenticity as they build their personal brands, this is unlikely to be the case for patient leaders. For these social stars, health concerns are chronic and unlikely to be resolved by a high follower count.

We are all brought back to our vulnerabilities when dressed in a hospital gown, when at the mercy of a pre-operative countdown, when staring down two treatment options and looking outside ourselves for support and guidance.

All we have is the roadmaps of patients who have been there before us, and in particular, those who have been brave enough to post to their feeds about how finding their voice brought them closer to the quality of life we all strive for.

Top 10 | Patient Leader Hero

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Patient Leader Hero Award

These are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community.


Asa Maass | Autism Patient Leader

2019 Patient Leader Hero Winner

“I’m a dad, husband, video creator, and autism advocate. I started my YouTube channel FatheringAutism almost 3 years ago. My intention was to spread awareness and acceptance while making the world a softer place to land for my nonverbal autistic daughter Abbie. Looking around the internet I found so many amazing mothers advocating for their children but not many dads sharing their story. I decided to make it a point to break the stigma that parenting responsibilities in a special needs family falls mainly on the mom. It didn’t take long to realize the videos we made as a family really helped others.”

Follow this inspiring WEGO Health Awards winner today.


Priscilla Maass | Autism Patient Leader

2019 Patient Leader Hero Finalist

“What started with a small YouTube channel has grown into a social media presence that helps hundreds of thousands of people around the world. I am personally able to form bonds with fellow autism moms and give experience and advice on navigating through things like puberty, meltdowns, bad days, and good ones. I stress the importance of not allowing a bad moment to define your day or a diagnosis to define your life. I help other moms to realize the importance of taking time for themselves and how that makes you a better caregiver.”

Click here if you want to add Priscilla’s positive voice to your feeds.


Kristal Kent | Fibromyalgia Patient Leader

2019 Patient Leader Hero Finalist

“If through my advocacy efforts, I can make 1 person with Fibromyalgia feel less alone and validated, then it gives my pain purpose!”

Learn more about Krista and follow her on social. 


Cassidy Megan | Epilepsy Patient Leader

2019 Patient Leader Hero Finalist

Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy’s idea which is now known as the Purple Day for epilepsy campaign.

Follow Cassidy on social and let her advocacy educate and inspire you. 


Lara Bloom | Ehlers-Danlos Syndrome Patient Leader

2019 Patient Leader Hero Finalist

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders.

Want to learn more about Lara’s advocacy? Click here.


Kristin Anthony | Cancer Patient Leader

“I entered the healthcare world when I was diagnosed with Thyroid Cancer in 2009. At that time, I was also experiencing breast health issues and my Mom had been diagnosed with her first breast cancer. I felt that something was not right, and started to research and ask questions though I was cautioned against doing that. I happened upon a rare genetic syndrome called Cowden Syndrome which results from a mutation of the PTEN Gene. I met many of the criteria and still had difficulty getting someone to listen. As it turns out, I was right and I do have a PTEN mutation. When I was diagnosed in 2011, there was little to no information or support available. I chose to change that and our foundation was born. Today, we have grown five fold plus since inception and awareness has improved greatly.”

Stay updated as Kristin continues to make a difference by following her.


Melissa Adams VanHouten | Gastroparesis Patient Leader

“After being diagnosed with gastroparesis in February of 2014, I became a passionate advocate for those in my community who feel voiceless and ignored. Currently, as the Association of Gastrointestinal Motility Disorders (AGMD) Patient Education and Advocacy Specialist, co-author of the book, “Real Life Diaries: Living with Gastroparesis,” and creator and administrator of several online patient support and advocacy groups, including “Gastroparesis: Fighting for Change,” I spend my days advancing the cause of those who struggle with the sometimes devastating and life-altering effects of gastroparesis and other chronic illnesses. It is my fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, cures.”

Melissa is fired up about advocacy. Follow her on social. 


Caleigh Haber-Takayama | Cystic Fibrosis Patient Leader

“Experiencing the struggles of end-stage lung disease and fighting to breathe every day gave me a new perspective on what is most meaningful in life.” Through Fight2Breathe, she aspires to increase awareness on chronic illness, genetic disease, and organ transplantation, identify and support innovative research, and amplify and focus the community to support those in the fight.

Add Caleigh to your feeds.


Rafaela Estrougo | Epilepsy Patient Leader

“Hi! I’m Rafaela, from Brazil living in LA. Was diagnosed with epilepsy when I was 1 year old. Discovered my path is to help and support, but specially spread the word out there. Join the epilepsy community and raise awareness to end stigma.”

Check out the important advocacy work Rafaela is doing. 


April Stearns | Breast Cancer Patient Leader

“Four years after my diagnosis, I launched WILDFIRE Magazine as a way to create community through personal storytelling as it pertains to young women diagnosed with breast cancer. I had no magazine publishing experience but as a writer and editor, I felt called to create a roadmap of sorts, a beautiful resource for others that also served as a break from the noise of the Internet and the medical pamphlets on breast cancer. I felt a strong need to help others heal through the reading and writing of stories.”

Learn more about April and WILDFIRE and follow on social.


Want to be a hero to your community? Following these Patient Leader superstars will give you the inspiration you need.

Top 10 | Lifetime Achievement

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Lifetime Achievement Award

Each year we come across Patient Leaders who continue to rock the health world. These Patient leaders are true stars who continue to shine and don’t fit into just one category. Let’s face it, they’ve done it ALL!

These Top 10 Lifetime Achievement Patient Leaders are the ultimate #PatientLeader role models:


Tom Kindlon | Myalgic Encephalomyelitis Patient Leader

2019 Lifetime Achievement winner

“After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill & disabled for a long period, possibly indefinitely, a prospect that wasn’t appealing. Moreover, I realised that there wasn’t a huge effort to research the illness well; it wasn’t on the radar the way many other conditions were. I have been busy for the last 23 years working away as a (voluntary) ME activist.”

Follow the WEGO Health Awards winner on social!


Kristal Kent | Fibromyalgia Patient Leader

2019 Lifetime Achievement Finalist

“I spent many years navigating the healthcare system to get an appropriate diagnosis, find knowledgeable treatment specialists, sift through misinformation about my medical condition and overcome the stigma of Fibromyalgia being a “fake disease” or it being “All In My Head.” My experiences led to frustration, and years of time wasted, With countless emergency room and hospital trips and very few treatment options. From my personal experiences I decided I could do one of two things: Wallow In Pity or Use My Experiences to be a Positive Agent of Change for the Fibromyalgia Community!”

Learn more about this positive Patient Leader and follow her social


Sharon Coyle-Saeed | IBD Patient Leader

2019 Lifetime Achievement Finalist

“Sometimes we go through things and think why? Why is this happening to me? If we think less on the where we will end up and focus on the journey, we may be open to the life lessons in the adversity.”

Find out about Sharon’s thoughtful journey by clicking here.


Cathy Chester | Multiple Sclerosis Patient Leader

2019 Lifetime Achievement Finalist

“I was diagnosed with multiple sclerosis when I was 27 in 1986. There were no approved medications or internet. I was scared and angry. My doctor said go home, rest and wait for another flare to call him some steroids. Then and there I decided my life’s goal was helping others with MS feel less alone, and empower, educate, and inspire them to live a positive life. My mission to help others is my passion. When followers say I’ve made a difference in their life I am on cloud nine!”

Add Cathy to your feeds and be inspired by her passionate advocacy.


Jenni Grover | Chronic Illness Patient Leader

2019 Lifetime Achievement Finalist

“I was 25 when my world was turned upside down by fibromyalgia, anxiety, asthma, and a handful of other chronic conditions. Since 2005, I’ve used my experience to build an online community for women with chronic illness who want to feel empowered despite serious illness—and taught thousands of women how to take charge of their lives through my website, videos, and speeches around the world.”

Keep up with Jenni’s advocacy efforts.


Colleen Beener | Gastroparesis Patient Leader

“Going from having a vibrant career to being too ill to work was very difficult. By helping to develop awareness and advocacy programs for other patients, I was able to channel my professional skills into something useful.”

Learn more about the important advocacy work Colleen is doing.


Lisa Deck | Stroke & Moyamoya Disease Patient Leader

Lisa is a seasoned advocate, motivational speaker and Co-Founder of Sisters@Heart Foundation. a nonprofit whose mission is to improve the lives of those affected by heart disease and stroke. For years, Lisa has engaged as an advocate, lobbyist and volunteer with the American Heart Association and has served as a Go Red for Women National Spokesperson. With her first being 20 years ago, Lisa has survived four strokes and was finally correctly diagnosed with Moyamoya Disease after her last stroke four years ago. Lisa underwent double brain surgery to treat her rare disease far from home to restore her health. Today, Lisa speaks all over the country as a motivational survivor, patient advocate and stroke and heart health ambassador with hundreds of media engagements under her belt. She is also involved as a rare disease advocate with the Moyamoya Foundation & Rare New England.

Want to be updated on Lisa and her advocacy? Add her to your feeds!


Greta Stifel | Rare Disease Patient Leader

“I am using my personal medical experience as a catalyst for positive change and outcomes. My compassion for my fellow human to not let what happened to me ever happen anyone is one of my purposes and mission. I suffer horribly and it did not have to be this way. I am doing all that I can as quickly as I can in the most strategic ways so as to make a difference and bringing forth critical mass awareness of this cancer and educating physicians, medical community at large and the public at large in this process.”

Click here to see how to follow Greta.


Kneeshe Parkinson | HIV Patient Leader

Kneeshe Parkinson is a motivational speaker, Certified Life Coach, Trainer, Facilitator, Activist, and Founder of KneesheSpeaksSTL~2018. She is an active member of the Positive Women’s Network USA-Missouri State Lead. As an active member, she was invited by Dr. Laura Cheever Deputy Associate Administrator and the Chief Medical Officer of the HIV/AIDS Bureau at Health Resources and Services Administration “Catalyzing Success: Advancing Innovation, Leverage Data, Ending the HIV Epidemic” for people fighting against the disease of HIV. In addition, she attended a luncheon hosted by the Mind, Body, and Spirit with Saint Louis County Health Department for National HIV/AIDS Aging & Awareness Day. Kneeshe was selected to receive the HIV 50 + Scholarship to attend the United States Conference on AIDS 2018 in Orlando, Florida along with being a part of the Host Committee.

Stay updated on Kneeshe’s advocacy by adding her to your feeds.


Alicia C. Staley | Cancer Patient Leader

For more than 20 years, Alicia has been passionately making a difference in the lives of tens of thousands of patient’s around the globe. Drawing from her experiences as a patient in hospitals, clinics, and cancer centers Alicia has coupled her extensive background in engineering and technology and developed a reputation as a patient advocate that can bring innovative solutions to complex problems.

Check out the advocacy work Alicia is doing and follow her.  


These Patient Leaders have accomplished a lot as advocates and show no signs of slowing down. Don’t forget to follow them!

Top 10 | Healthcare Collaborator

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Healthcare Collaborator Award

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.


Melissa Talwar | Fibromyalgia Patient Leader

2019 Healthcare Collaborator: Patient Winner

Melissa’s advocacy work started in the early 2000’s, and she was part of the first Fibromyalgia group in Sacramento for the first Fibromyalgia Proclamation. That day ignited a passion to pursue advocacy work and find better answers for the Fibromyalgia community. She continues to bring Fibromyalgia education to patients across the country and to legislators at Capitol Hill. Be sure to connect and she’ll see you on the road!

Follow the WEGO Health Award winner on social.


AutonomicRN | Dysautonomia Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“RN turned full time patient. After Dysautonomia turned my life upside down, I was forced to figure out the new normal. While each day constantly brings change and unpredictability, I’ve been able to use my experiences to give a voice to those who don’t have one. Through blogging, online advocacy, and serving on a National Leadership Team for a nonprofit as Medical, Clinical Liaison and also on their Advocacy Team, my voice now reaches individuals globally. While I loved bedside nursing, I never thought about the reach that I possibly could have on a global level. Connecting with so many patient leaders, advocates, and members of health care teams has been invaluable and has allowed me to forge new relationships that I never thought was possible.”

It’s with a heavy heart we share Kim has since passed, but please learn more about her journey and become inspired by her work.


Stacy Hurt | Cancer Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I am a passionate, outspoken health care strategist and activist. Having been a healthcare executive for 20+ years and advocating for both my disabled/special needs son and myself as a stage IV colorectal cancer survivor, I understand the need for connection and collaboration between health care professionals and patients. Empathy and communication are greatly lacking, and I am the authentic voice to bridge that gap. I am particularly interested in survivorship, invisible disabilities, patient centricity, and #doingawareness (as opposed to just “raising” awareness).”

Add Stacy to your feeds to stay updated on her advocacy.


Brianna Cardenas | Ehlers Danlos Syndrome Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“As a Physician Assistant with EDS and a CSF leak, my goal is to raise awareness about these conditions both online and amongst my colleagues in the medical field. I now work as a professor in a PA program and teach my students about EDS, CSF leaks, and other chronic illnesses and how they impact patients. I am grateful for my perspective from both sides of the stethoscope and will continue to advocate for better healthcare for all of us!”

Learn more about the important work Brianna is doing and follow her on social. 


Liz Kennerley | Rare Disease Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I’m a mitochondrial disease patient and volunteer federal health policy lobbyist. My primary focus will always be rare disease legislation. However, in order to completely advocate for the 1 in 10 Americans with a rare condition other areas of health policy had to become a priority. While the legislative priorities are to help patients like all of us, the angle, legislation, and discussion are different each time. On the Hill, I have advocated alongside pharmaceutical CEOs, scientists, doctors, and patients.”

Check out Liz’s advocacy on Capitol Hil and beyond. 


Amanda Greene | Lupus Patient Leader

“As a Patient Leader, Amanda encourages other people to become your own best advocate and start by sharing their story to impact and inspire healthcare organizations to collaborate with patient communities. Amanda is known for sharing her personal healthcare experience wherever she is – whether on stage (as a keynote speaker or panelist), writing a guest post for a national healthcare organization or online.”

Follow Amanda on social.


Paolo Maccallini | ME/CFS Patient Leader

“A lot of patients have asked me why I use my little energies to study my disease, instead of just waiting for science to conquer it.There are many reasons, the first one being that I am desperate because of the cognitive disability that is worse than death. I am not concerned about the physical limitations, at all, even though I have been mostly housebound for the last 20 years. Another reason is that I like computational biology, and I started studying engineering before getting sick with the idea of switching to bioengineering after graduating. So, this is my job.”

Stay updated about Paolo’s advocacy work.


Barby Ingle | Chronic Pain Patient Leader

Cheerleader of HOPE – Barby Ingle, BSc, is an Amazon bestselling author, reality television personality, and president of International Pain Foundation (iPain) sharing her powerful story about life-changing events that forced life reflection, purpose, and her journey from wheels to heals. Barby has a degree in Social Psychology from George Mason University and more than 20 years of living with chronic pain and 30 years of motivational speaking experience.

Want to learn more about Barby? Click here to follow her on social. 


Tom Kindlon | ME Patient Leader

“After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill & disabled for a long period, possibly indefinitely, a prospect that wasn’t appealing. Moreover, I realised that there wasn’t a huge effort to research the illness well; it wasn’t on the radar the way many other conditions were. I have been busy for the last 23 years working away as a (voluntary) ME activist. Much of what I concentrated on in the early years was raising awareness & understanding in Ireland with the Irish ME/CFS Association. I have done around 50 media interviews & have been featured in most of the national newspapers in Ireland. I have written dozens of press releases & have helped arrange for around 130 Irish families affected with ME to tell their story over the years in over 400 interviews. A lot more people are diagnosed here now & attitudes have improved.”

Follow Tom to be educated and inspired.


Brooke Schnittman | ADHD Patient Leader

Brooke Schnittman, MA, ACC, BCC, has been nominated for multiple awards including “Best In Show Community” and”Advocating For Another.” She is the creator of What’s Next and ADHDEdCamp. When working with clients, it is Brooke’s mission to empower them to achieve their personal goals and break through the obstacles that seem to be holding them back in life.

Add some inspiration to your feeds by following Brooke.


Top 10 | Hilarious Patient Leader

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Hilarious Patient Leader Award

Advocacy doesn’t have to be all business and raising awareness doesn’t have to be all work. The truly funny Patient Leaders among us bring a lightness to the online health community. They address serious subjects with humor – and we love them for it. They may be witty, sharp, dry, or just have a way to tell a story that is truly funny.

Whether you’re looking for a dose of daily laughter or hoping to connect with new Patient Leaders in the space, take a moment to meet and follow the Top 10 Hilarious Patient Leaders of the online health community.


Double Baggin’ It | IBD Patient Leaders

2019 Hilarious Patient Leader Award Winner

Danielle Gulden and Joe Teeters are IBD warriors and permanent ileostomates. They’re comedians, speakers, advocates and Two Best Friends without Buttholes! Joe and Danielle met through an ostomy support group and realized that they not only had a similar health journey, but also shared the same sense of humor and positive outlook on life. They became best friends, and soon after, Double Baggin’ It was born! DBI is their vehicle to spread awareness and advocate for patients living with inflammatory bowel diseases and ostomies. Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease! They believe in the power of humor, advocacy and awareness!

Learn more about Double Baggin’ It and follow the WEGO Health Awards winners now.


Myisha Malone | Crohn’s Disease Patient Leader

2019 Hilarious Patient Leader Award Finalist

“I became an advocate after being diagnosed with ulcerative colitis and than diagnosed with crohn’s disease in 2016 I almost lost my life twice due to this horrible disease I believe that everyone needs someone they can count on to help them through this tough tile being newly diagnosed or a professional patient accurate information is key with my support group on facebook @gmaeofcrohnsandchronicillness my goal is to raise awareness as much as possible so no one feel as alone as i felt when i was first diagnosed i love being an advocate for others”

Stay up to date with Myisha and her advocacy.


Kimberly Elayyne | Ankylosing Spondilitis Patient Leader

2019 Hilarious Patient Leader Award Finalist

“I knew that I couldn’t be the only one experiencing this so I decided to make a change the best I could. I began being an advocate in 2016 when life hit me hard. The only thing I knew how to do that saved me from the pain, was to encourage others. I want to leave this world and people better than I found it.”

Follow Kimberly on social.


Naunie Harris | Chronic Pain Patient Leader

2019 Hilarious Patient Leader Award Finalist

“I’m a 19 year old nursing student and worship leader! I have been diagnosed with multiple chronic illness’s since I was 11 and have had 12+ procedures. I have a feeding tube so I guess you could say i’m a “cheap date”! I’m currently in nursing school online as well as writing a book to be released in 2020. I share my journey through social media with humor and how being sick has changed my view on life!”

Add Naunie’s hilarious voice to your feeds.


Psoriatic Pstandup | Psoriasis Patient Leader

2019 Hilarious Patient Leader Award Finalist

“Psoriasis is a serious disease, but that doesn’t mean we have to take ourselves too seriously!
My name is Chris, and my wife and I founded Psoriatic Pstandup in 2016. I use humor to relate to others with psoriatic disease.”

You don’t want to miss out on this funny approach to advocacy!


Nicole Sigur | Cystic Fibrosis Patient Leader

“Hey there! Nicole, otherwise known as @cystic4real or “gross she’s coughing a lot”. Cystic Fibrosis patient and advocate. Double lung transplant recipient 6/14/19. 5 foot with male lungs; sorry gentlemen, I’m taken. Married 6/1/19 to best IT guy ever (if you had any question that I’m a multitasker). Mixed raced mamas girl; Ravenclaw; Capricorn. Self proclaimed comedian.”

Find out more about Nicole and add her to your feeds.


Bev ‘YumaBev’ Ribaudo | Parkinson’s Disease Patient Leader

“I have had Young Onset Parkinson’s Disease (PD) for 20+ years and use laughter and humor to treat myself and educate others about PD. I write a blog called Parkinson’s Humor and also authored a book with the same title (available on Amazon.) I write and perform PD song parodies, even though I know I can’t sing!”

Join YumaBev in laughing at Parkinson’s.


Ken Taylor | Chronic Pain Patient Leader

Ken Taylor is a caregiver for his wife who lives with multiple chronic pain conditions. Ken is a chronic pain educator, patient advocate, and vice-president of the International Pain Foundation. He is also a motivational speaker and best-selling author on pain topics, graphic designer, and reality personality.

This funny caregiver is someone you’ll want to add to your feeds!


Keeya Steel – Hell’s Bells and Mast Cells | Chronic Illness Patient Leader

“When you become allergic to chocolate, alcohol, and sunshine, you absolutely learn to cope through humor. Hell’s Bells and Mast Cells is a blog and collection of memes raising awareness about chronic illness, disability, and mast cell disease. Sometimes my humor is as dry as my eyeballs after three Zyrtec. I also am diagnosed with EDS and POTS, but I don’t want to come across as a show off.”

Click here to follow this hilarious advocate.


@TheCancerPatient | Cancer Patient Leader

While cancer is no joke, @Thecancerpatient uses social media provides a funny and therapeutic way to look at the cancer journey. His content is relatable to cancer patients and survivors of all types and stages as well as caregivers and medical providers. This satirical look at life as a cancer patient offers necessary moments of laughter along the cancer journey.

Add some laughter to your feed by connecting with @TheCancerPatient.

 

Top 10 | Rookie of the Year

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Rookie of the Year Award

Every year, more and more health bloggers are excited by empowerment, raising awareness, and helping others. This particular group of Patient Leaders just started their blog, site, or community work this year and are already making a huge impact. Though they’re new to the scene, they show a ton of promise and are, without a doubt, going to do amazing things in the future.

Help us welcome these Top 10 Rookies of the Year to the online health community:


Emily Garnett | Breast Cancer Patient Leader

2019 Rookie of the Year Winner

“I was diagnosed with metastatic breast cancer at age 32, the same week my son turned two and my husband and I celebrated our fifth wedding anniversary. (Big week for our family). After my diagnosis, I began blogging about my diagnosis, treatment, and thoughts about all of it. I found that there needed to be further conversations about the nuances of life with/around cancer, and started my podcast, The Intersection of Cancer and Life, in 2018. Since my diagnosis, I have been a corporate speaker, program organizer, advocate, and collaborator for a number of research and community groups relating to metastatic breast cancer. While I was busy with all of that, my cancer was also quite busy, and spread from my bones to my lung, liver, and brain. Despite being composed of mostly tumor at this point, I continue to blog, podcast, and talk everyone’s ear off about the need for research, advocacy, and better understanding of metastatic cancer.”

It’s with deep sadness we share Emily passed away in early 2020, read more about her legacy here.


PodcastDX | Rare Disease Patient Leader

2019 Rookie of the Year Finalist

“Many Americans turn to friends and family for support and advice when they have a health problem. Since people’s networks are expanding to include online peers, particularly in the crucible of rare disease, we decided to implement a podcast series to interview and discuss various diagnoses with actual patients. Health professionals remain the central source of information for most Americans, but “peer-to-peer healthcare” is a significant supplement. We are just entering our second year, but the impact we are making shows with our ever growing listener base. Our numbers are fast approaching 10,000, and we are picked up in dozens of countries! We hope to continue this growth as we add a new arm to our company, bringing mental health into clearer focus.”

Add PodcastDX to your feeds to stay on top of their advocacy.


The Living Tree | Fibromyalgia Patient Leader

2019 Rookie of the Year Finalist

“Helping others is something I have always been passionate about so when I started accumulating all this knowledge and tips and tricks, I knew I had to share it with others. Just like that, my YouTube channel The Living Tree was born! I love being able to share everything that I’ve learned so far and sharing my experiences with others who may need that information the most. My goal is to continue to better myself, to keep growing and learning, to continue to share my truths about life with Fibromyalgia through the good days and bad days, and to always be there for my fellow spoonies.”

Brighten up your feeds by following this passionate fresh voice.


Mia Gaudenzi | Cystic Fibrosis Patient Leader

2019 Rookie of the Year Finalist

“My story begins the day I was born although no one knew it yet, I was incredibly ill. At 3 years old I began getting frequent pneumonia’s and doctors couldn’t figure out why I was so unlucky. Mom and I would make regular trips to the ER for answers and receive the same answer over and over “your daughter is fine, she’s just caught a virus, don’t worry too much” so after many google searches and symptom checkers my mom had unofficially diagnosed me with life threatening, terminal Cystic Fibrosis. Later on genetic testing would confirm that diagnosis and my life changed forever!”

Learn more about this young leader and her advocacy.


Fab Fertility with Blair Nelson | Infertility Patient Leader

2019 Rookie of the Year Finalist

“My husband and I began trying to grow our family when we got married two years ago. Being the impatient woman I am, after 6 months of BFNs (big fat negative tests), I had to be proactive. After very basic and preliminary testing we found ourselves with a challenging infertility diagnosis and in a Reproductive Endocrinologist’s office with IVF as our only option to start a family. Marital bliss was slapped in the face with infertility reality. After our first round of IVF we were able to make 4 viable embryos to transfer. Our first attempt and our second ended in miscarriage. The miscarriage was what finally shook me to my core. My heart was broken, I was lonely and confused. I had no where to turn. So I did what anyone in this day and age would do… turned to the internet! I started Fab Fertility to find community and cope. That quickly turned into a passion to help educate and encourage others so they never felt how I did. I’m still in the middle of my journey but I feel a sense of purpose from it all and I am forever grateful for the opportunity to advocate for others trying to make their dreams of a family come true.”

Find education and encouragement by following this inspirational leader.


Rafaela Estrougo | Epilepsy Patient Leader

“Hi! I’m Rafaela, from Brazil living in LA. I was diagnosed with epilepsy when I was 1 year old. Discovered my path is to help and support, but especially spread the word out there. Join the epilepsy community and raise awareness to end stigma. Epilepsy doesn’t define me. And it doesn’t define you either!”

Learn and grow along with Rafaela by adding her to your feeds.


Myisha Malone | Crohn’s Disease Patient Leader

“I am dedicated to helping raise awareness for Crohn’s disease and all chronic illnesses and I run a support group on facebook called @gameofcrohnsandchronicillness. My goal is to raise awareness as much as possible so no one feel as alone as I felt when I was first diagnosed. I love being an advocate for others.”

Love to be educated and inspired? Click here to follow Myisha.


Ellen Bookman | Parkinson’s Disease Patient Leader

“It took a Parkinson’s diagnosis to realize I have a gift. The other day, John, one of my boxer friends, said to me ‘thanks for being my friend and making my situation easier.’ To anyone who will listen, here’s my message — Get up. Get up now, and don’t wait for a diagnosis to change your life. And, if you happen to get a life changing diagnosis, my advice is to LIVE. JUST LIVE!!!!”

Check out Ellen and her positive advocacy.


Jamie Teachey-Pyle | Chronic Illness and Mental Health Patient Leader

“Before I became disabled I was a teacher. I will teach forever. I will teach people to advocate. I will teach people to KNOW THEIR patient rights. I will be an unpaid patient advocate. It took 30 years for me to get a diagnosis. I will teach people to advocate so this does not happen to them.”

Stay updated on Jamie’s incredible advocacy by following her.


Fabulous and Fatigued – Sara Naveed | Fibromyalgia Patient Leader

“It’s difficult having an invisible illness – being in a place where nobody can ever tell how it impacts you on a daily basis, yet it affects every single decision you make in your life. I’ve come to realize that I consider it to be a blessing, and a curse at the same time.”

Click here to learn more about Sara and to add her to your feeds.


These rookies are ready for the big leagues. Don’t forget to follow them!

Top 10 | Best in Show: YouTube

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Best in Show: YouTube Award

The Best in Show: Youtube category highlights the individuals and teams who’s videos are at the core of their advocacy. Whether they capture their day to day lives, offer how-to videos, highlight resources, or educate and raise awareness, they’re engaging followers through creative but informational content. As of 2019, 80% of global internet consumption is video. So if you have yet to bring your advocacy to video, maybe you want to get inspired by these Top 10 Best in Show: YouTubers.

The Aspie World | Asperger’s Syndrome Patient Leader

2019 Best in Show: YouTube Winner

Dan is a YouTuber from the UK who aims to educate others about Asperger’s and Autism. His high-energy and often entertaining videos are well-received by his over 115K subscribers.

Click here to follow the WEGO Health Awards winner. 


Asa Maass | Autism Patient Leader

2019 Best in Show: YouTube Finalist

“I’m a dad, husband, video creator, and autism advocate. I started my YouTube channel FatheringAutism almost 3 years ago. My intention was to spread awareness and acceptance while making the world a softer place to land for my nonverbal autistic daughter Abbie. Looking around the internet I found so many amazing mothers advocating for their children but not many dads sharing their story. I decided to make it a point to break the stigma that parenting responsibilities in a special needs family falls mainly on the mom.”

Find out how to watch Asa’s fun and educational videos.


Violin MD | Healthcare Patient Leader

2019 Best in Show: YouTube Finalist

Siobhan is a violinist turned doctor who uses YouTube to share an inside look at practicing medicine. Her videos often educate in an accessible way about health and wellness.

Add Violin MD to your feeds.


Priscilla Maass | Autism Patient Leader

2019 Best in Show: YouTube Finalist

“12 years ago my daughter was diagnosed with ASD. Like most parents do, we were instant advocates for our child working to ensure a quality future for her. 3 years ago my husband had this crazy idea that our family could also advocate for others by sharing our day to day lives as an autism family. What started with a small YouTube channel has grown into a social media presence that helps hundreds of thousands of people around the world. I am personally able to form bonds with fellow autism moms and give experience and advice on navigating through things like puberty, meltdowns, bad days, and good ones. I stress the importance of not allowing a bad moment to define your day or a diagnosis to define your life. I help other moms to realize the importance of taking time for themselves and how that makes you a better caregiver.”

Check out the important work Priscilla is doing and follow her on social. 


Christa Holmans – Neurodivergent Rebel | Autism Patient Leader

2019 Best in Show: YouTube Finalist

“I don’t think being autistic makes me defective or broken. I believe that I have a different type of mind, that allows me to view the word with unique and fresh perspective. This idea is controversial, because, autistic people also have weaknesses. Despite my difficulties, I LOVE being autistic and would never want to give it up. Follow me to find out how autism isn’t what most people think it is.”

Learn more about Christa.


Amy Lee Fisher | Chronic Illness Patient Leader

“I suffer with chronic illness but I’m determined not let it get in the way of doing what i love! I LOVE spreading awareness about chronic illness & I LOVE making videos and even better I love making them for you guys and watching you all enjoy them!”

Find out how to follow Amy.


Michaela Davert | Osteogenesis Imperfecta Patient Leader

“As a society, I’ve noticed and learned we view disability and other health conditions as a tragedy and sadness. As I begin to notice this more and more, I wanted to continue my advocacy work in a way that would reach more people. This is when I started my YouTube channel, FunsizedStyle. I wanted to share the joy that I have for life not in spite of, but because of my disability. On my channel, I do educational videos about my disability and other health conditions I have to teach others. And I enjoy educating those about my health. My hope is that my platform is a way to let others know who are experiencing similar challenges, that they have a purpose and have so much to offer. I also use my platform in an additional avenue of advocacy besides just my health. I hope to be a new face to the beauty and fashion industry. Many strides have been made to showcase women in the beauty and fashion industry with disabilities, but there is still a long way to go.”

Follow Michaela on social.


Carissa Barzee | Infertility Patient Leader

“My husband and I have been going through infertility for almost 5 years and we have shared it on social media for over 2 years. We have done multiple fertility treatments (meds & ti, IUI, and IVF). We have also experienced the heartbreak of child loss twice. Our biggest goal is to help others feel less alone, educate in the best way we can, while also sharing that you can still find joy in the journey. We are sooo grateful to have a platform and to be a voice for others.”

Add Carissa’s positive voice to your feeds.


Our LANDing Crew – Stephanie Pesterfield | Autism Patient Leader

“We are a down to earth large family of 8. We show what it’s like to be a special needs family while tackling homeschooling, autism, mom life, cleaning, and family fun.”

Follow this family for education, support, and fun!


Kelsey Ohs | Cerebral Palsy Patient Leader

“I believe that having a child with a disability has been the greatest privilege I’ve ever been entrusted with. I dedicate time in my busy schedule to share with the world that although life with a disabled child is hard work, it’s not all that bad – in fact, it’s the greatest journey of my life.”

Stay updated as Kelsey advocates and educates through video.


Be sure to subscribe to these powerful Youtube accounts for more inspiration!

Top 10 | Advocating for Another

The 2019 WEGO Wellness Honors became our most significant event yet! With over 6k elections and also 130k recommendations, we had the ability to commemorate even more Patient Leaders than ever.

The program commemorates the leading 5 finalists in each of the 15 WEGO Health Awards groups, however with many elections, it’s virtually difficult to radiate an intense light on all these deserving candidates! In hopes of acknowledging a lot more candidates, we’ve assembled the Top 10 Patient Leaders in each group based upon neighborhood recommendations.

WEGO Health Awards Advocating for Another Award

Sometimes the leading Patient Leaders aren’t individuals, however instead caretakers and also for any person that is an individual, you understand simply just how much your caretaker sustains you. Below are the Top 10 Advocating for Another Patient Leader all-stars, whose interest for campaigning for originates from the love of an additional.


Autism_irl|Autism Patient Leader 2019 Advocating for Another Winner”I am a BCBA as well as Autism Sibling that has actually invested the previous 10 years operating in the autism area. 2 years earlier, I returned to Upstate NY to aid my family members take care of my sibling, Robert, that is autistic. Robert has some extreme ability shortages as well as behavior unwanteds that stop him from living an independent life. I am utilizing my expertise in the area of ABA and also my experience as an autism expert to aid him get required life abilities in order to live a satisfying, effective, as well as satisfied life. Peeks of my sibling’s trip as an autistic grownup can be

seen on our Instagram web page. Sharing our lives on social networks


has actually permitted me to get in touch with numerous outstanding people in the autism area as well as

has actually managed me an electrical outlet to promote in behalf of people that are not able to support on their own. “Comply With the WEGO Health Award champion on social! Priscilla Maass|Autism Patient Leader 2019 Advocating for Another Finalist “12 years ago my little girl was identified with ASD. Like the majority of moms and dads do, we were instantaneous supporters for our kid functioning to make certain a high quality future for her. 3 years ago my spouse had this insane suggestion that our family members might likewise promote for others by sharing our daily lives as an autism household. What began with a tiny YouTube network has actually become a social media sites existence that aids numerous countless individuals worldwide. I am directly able to develop bonds with fellow autism mommies as well as provide experience and also suggestions on browsing via points like the age of puberty, crises, negative days, as well as excellent ones. I worry the relevance of not permitting a negative minute to specify your day or a medical diagnosis to specify your life. I assist various other mamas to understand the relevance of taking some time on their own as well as just how that makes you a far better caretaker. If I needed to explain myself in one word it would certainly be” favorable “. I

simply experienced weight-loss surgical treatment to guarantee I was about as lengthy as feasible for my little girl. With sharing my worries, battles, as well as accomplishments I’ve developed


a tiny household of various other caretakers and also mothers that share their very own fat burning trip. We are

a lot greater than a YouTube network. We have actually discovered that by sharing our overview on life we

can give others with hope. “Find out more regarding Priscilla as well as follow her campaigning for trip. Pascazia Mazeze |

Sickle Cell Disease Patient Leader 2019 Advocating for Another Finalist”In 2015, remarks


like”Your child does not appear like he has sickle cell condition “passionately pressurized me to begin thinking about the methods which I can get to many others, specifically moms and dads as well as

caretakers to approve and also take excellent treatment of their sickle cell youngsters as well as likewise

stay clear of the misconceptions that have actually been developed over sickle cell illness. My leisure time was currently committed to assist households influenced straight or indirect with sickle cell illness, spending quality time to inform them as well as elevating recognition on sickle cell illness to the area around me. In a culture that is much less informed and also much less mindful regarding sickle cell condition I DECIDED TO BE THE CHANGE.” Go here to comply with Pascazia as she makes a distinction for sickle cell households. LeAnna Headley|Pediatric Cancer Patient Leader 2019 Advocating for Another Finalist

“Childhood cancer cells is the leading reason of fatality by condition, eliminating 7 youngsters today in the United States. It is an epidemic that is discussed really little. In the previous 30 + years, just 3 medications have actually been created for youngsters, while hundreds have actually been established for particular grown-up cancers cells. Kids are being offered grown-up medicines in pint-sized kind and also it is unfair. I chose I intended to do something extra substantial for these children so I started sending out as well as supplying treatment bundles all throughout the United States to youngsters dealing with. I have had the outright opportunity of fulfilling these family members and also seeing the distress very first hand.

I have actually listened to the sobs, seen the discomfort and also absence of therapy choices as well as it has


just made me much more enthusiastic regarding the reason. These children have actually come to be close friends to me, some also household.”Sign up with LeAnna as she makes a distinction for kids with cancer cells. Tory Aquino|Juvenile Arthritis Patient Leader 2019 Advocating for Another Finalist Tory supporters for her child, Mariah, as well as defend all households impacted by adolescent joint inflammation. On social networks, Tory makes use of the take care of Mariah’s Movers where she produces area, shares pointers, as well as aids to drive study onward. Click on this link to adhere to Tory on social. Isaac Okello|Sickle Cell Disease Patient Leader Isaac Okello has actually been doing Sickle Cell advocacy for the last 3 years in Uganda.He sustains and also adds exceptionally to enhance lifestyle of people dealing with sickle cell condition throughout the Country. He remains to progress treatment and also therapy by sustaining research study as well as promoting with the federal government on part its components. He additionally communicates with area companies and also risk owners to bring even more understanding to this illness. Isaac Okello is the Founder of Raising Hope International Friends(RHIF) company based in Uganda that does Awareness of Sickle Cell Disease in Uganda. He is presently the Executive Director for Raising Hope International Friends( RHIF ). RHIF has actually a technique laid to enlighten and also animate 2,000,000 Ugandan, examination 100,000 Ugandans and also 2,000 Sickle Cell sufferers on enhanced treatment by 2030. RHIF is planned to develop self-confidence, elevate self-worth, enhance the wellness condition as well as encourage the neighborhood we deal with to get involved completely in their very own event as well as choice making to help with area based tasks. #strongerTogether Visit this site to adhere to Isaac. PodcastDX|Unusual Disease Patient Leader PodcastDX is a regular meeting based podcast collection. Individuals offer experience based clinical understanding, in a peer to peer layout. Numerous Americans count on loved ones for assistance as well as recommendations when they have an illness. Given that individuals’s networks are increasing to consist of on-line peers, especially in the crucible of uncommon illness, we made a decision to apply a podcast collection to meeting as well as go over numerous medical diagnoses with real people.

Health and wellness experts stay the main resource of details for a lot of Americans, however”peer-to-peer medical care “is a considerable supplement.


Intend to get in touch with PodcastDX? Visit this site. Melissa Talwar|Fibromyalgia Patient Leader Melissa prepares to bring favorable health care experiences to the Fibromyalgia neighborhood! Her persistent discomfort trip started at the age of 14 and also after a lengthy 24 year trip of decrease as well as a shopping list of medical diagnoses, she took her wellness right into her very own hands. Via biohacking as well as individual encouraged inspiration she has actually provided herself a break in decrease and also concentrated her power on developing the not-for-profit company, International Support Fibromyalgia Network. #SupportFibro counts on partnership.

It is open, participatory and also specialized to informing, supporting as well as motivating the fibromyalgia neighborhood.


Intend to include Melissa to your people? Go here.

Cori Register|Cancer Cells Patient Leader Also as she combats her very own fight versus a Ewing’s sarcoma regression, Cori puts a large amount of power right into what she calls her “life’s enthusiasm.” She began FAM– Fighting All Monsters, something “that remains to offer me function and also inspiration to maintain going, and also maintain assisting as numerous households dealing with pediatric cancer cells as feasible.” Learn where to comply with Cori. Gustavo San Martin|Several Sclerosis Patient Leader When Gustavo was identified with several sclerosis in 2011, he chose to utilize his organization abilities to enhance the lives of various other Brazilians dealing with MS. AME– Amigos Múltiplos pela Esclerose was birthed as well as Gustavo remains to remain active promoting for others dealing with the exact same illness he does. Adhere to along as Gustavo makes a distinction. These determined supporters are making a large distinction. Allow’s reveal them some like with a comply with! Written by WEGO Health WEGO Health is a mission-driven firm linking health care with the experience, abilities and also understandings of individual leaders. We are the globe’s biggest network of person leaders, functioning throughout practically all health and wellness problems as well as subjects.

Top 10 | Best in Show: Instagram

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Best in Show: Instagram Award

These Top 10 Instagram Patient Leaders are leveraging the media sharing platform to raise awareness for their condition area. Through pictures, videos, and stories, these leaders are cultivating a community of support, transparency, and encouragement. For anyone looking to bring their advocacy to Instagram, these are the ones to watch for strategy, inspiration & engagement tactics!


@health_anxiety (Taylor Marae) | Mental Health Patient Leader

2019 Best in Show: Instagram Winner

Taylor Marae, registered dietitian in integrative and functional medicine, owner of the instagram account @health_anxiety and creator of @anxietytoolkit / anxietytoolkit.org. After going to extreme panic disorder, health anxiety, depression and agoraphobia, Taylor found her way to recovery and made it her life goal to help others struggling with mental health issues feel less alone. During her worst anxiety days she felt so alone like no one understood, she made it her goal to never let someone else feel that way. Today, she freely speaks about her advocacy for mental health and has shaped her career around mental health. Now, gaining over 84,000 followers she is helping so many people feel less alone. Since, she has opened up Anxiety Toolkit which provides people with boxes full of anxiety fighting products to help find peace during your peak of panic.

Get to know the WEGO Health Awards winner and follow her on social.


@CarissaBarzee (Carissa Barzee) | Infertility Patient Leader

2019 Best in Show: Instagram Finalist

“My husband and I have been going through infertility for almost 5 years and we have shared it on social media for over 2 years. We have done multiple fertility treatments (meds & ti, IUI, and IVF). We have also experienced the heartbreak of child loss twice. Our biggest goal is to help others feel less alone, educate in the best way we can, while also sharing that you can still find joy in the journey. We are sooo grateful to have a platform and to be a voice for others.”

Want to get to know Carissa? Click here.


@TheCancerPatient | Cancer Patient Leader

2019 Best in Show: Instagram Finalist

This account offers a satirical look at life as a cancer patient. It’s relatable and funny memes bring much needed laughter to the challenges of a cancer patient journey.

Add @TheCancerPatient to your feeds.


Dr. Christina Iglesia | Mental Health Patient Leader

2019 Best in Show: Instagram Finalist

On October 10th, 2018 (World Mental Health Day), Dr. Christina Iglesia launched the #therapyiscool mental health action campaign. Dr. Iglesia launched this initiative after several patients disclosed how they don’t disclose the fact that they participate in therapy, even to the closest people in their lives. Statements shared, like “My parents don’t believe in therapy” or “People would think I am crazy or something” continued to make their way into the therapy room. The theme of these conversations kept coming back to stigma, this implicit agreement that mental health issues are not to be talked about. It became clear to Dr. Iglesia that people will continue to suffer in silence until we make it socially acceptable to partake in mental health treatment, such as therapy. It is with this in mind that Dr. Iglesia created the #therapyiscool mental health action campaign, with the intent to encourage authentic and open conversations about mental health.

Find out more about Dr. Iglesia’s mission and add her to your feed.


@cinnamillie_ | Eating Disorder Patient Leader

2019 Best in Show: Instagram Finalist

After being diagnosed with the most deadly psychiatric condition (Anorexia Nervosa) at the age of 15, Millie went against all odds to become the inspiring young woman she is today. Born and raised in a little South Yorkshire town in England, Millie personifies the “she may be but little, but she is fierce” quote by Shakespeare. Since creating her Instagram account to go in-depth about her mental health struggles, Millie has amassed over 11.5K followers, as well as finding love through her account too. Millie explains the ins-and-outs of having anorexia, whilst also going into the nitty-gritty areas which are too “taboo” in society, such as the physical effects of eating disorders, the hardships that arise from weight restoration and the suicidal ideation; but, Millie manages to twist this into a positive, encouraging her followers to fight against the cruelty of eating disorders, revealing what her life is like with the illness (mostly) not in her life anymore.

Add Millie’s motivational voice to your feed.


Natalie Kelley – @plentyandwellwithnat | Ulcerative Colitis Patient Leader

“There were moments in that hospital bed I thought I would never be where I am at today – running my own business, helping other women with IBD and connecting with the most AMAZING IBD community on Instagram. But most importantly, I’ve learned that an autoimmune disease doesn’t make it harder to reach my dreams, it adds TO my dreams because without ulcerative colitis I wouldn’t have found my passions, I wouldn’t be a holistic health coach, I wouldn’t have the amazing community that I now have and I wouldn’t be able to change other IBD patients’ lives, and that is truly priceless.”

Want to learn more about Natalie? Click here to follow her.


Arafa Salim Said | Sickle Cell Disease Patient Leader

Arafa’s biggest advocacy aim is to move toward a sickle cell-free Africa in future generations. In the meantime, she promotes healthier, stronger, and more supported living with sickle cell disease. Specific objectives include country-wide pre-marital sickle cell testing, promoting literacy for young people with sickle cell, and increasing the standards of sickle cell care. Through instagram, twitter, facebook, youtube, and other social media platforms, she is able to build a large digital community that can work together toward these aims. Her digital media advocacy also offers inspiration, education, and advice for Tanzanians living with sickle cell disease. Her hope is that her efforts will lead to a brighter future for the next generation of Tanzanians.

Check out Arafa’s important advocacy work. 


Megan King @thetravelinghaloofhope | Ehlers Danlos Syndrome Patient Leader

“Becoming an advocate for EDS happened by chance. My journey began in Sept. 05′ at 16. I can’t believe 1 decision changed the trajectory of my life forever. I’ve endured 35 surgeries due to EDS with the next 1 scheduled for Sept. 19′. Due to limited resources I wrote about my journey in the hopes to connect with others. I want to be a small part of the solution for EDS treatments. It’s classified as rare but it really isn’t. No two cases of EDS are the same. This can make diagnosis difficult because there’s no “face” to EDS. We are all unique individuals with our own unique presentation of symptoms. As I wrote, to my surprise, people responded to what I was sharing.”

Follow Megan and see the important work she’s doing.


Rachel Straining – @thenoglutengirl | Crohn’s Disease Patient Leader

“When I was first diagnosed, even though I knew it wasn’t true, I just felt like the only person in the world who had this disease. I didn’t realize that there were other people out there who were fighting battles so similar to one that was waging war within my own life. ⁣One day, I made the random decision to make an Instagram account to find some gluten-free food inspiration. That day, I also found myself searching the hashtag “Crohn’s Disease.” That day, I realized that, all along, I had never really been alone.”

Add Rachel to your feed and stay updated about her advocacy.


Lucy Johnbosco | Diabetes Patient Leader

“I have been using my Diabetes experience as a Type One diabetes patient to motivate and inspire others who have lost hope.”

Inspired by Lucy’s mission? Add her to your feed.


Don’t forget to follow these Top 10 advocacy accounts on Instagram for more inspiration!