There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space. To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.
This past week, the WEGO Health team divided and conquered to attend HealtheVoices (LINK) in Dallas, Eye for Pharma in Philadelphia and DTC in Boston. In honor of this busy (but exciting) conference season, we’re taking this week to recognize the Top 10 Healthcare Collaborator Patient Leaders.
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.
Lupus Patient Leader
“Diagnosed with Lupus over 36 years ago, I openly share my healthcare story, resources and support online. I strive to raise awareness for Lupus, Chronic Pain, Fibromyalgia, Osteoarthritis and new technology (like “how Virtual Reality can help patients reduce their pain”) wherever I am, from Capitol Hill to participating in a healthcare chat on Twitter, or giving a keynote from the stage in New Orleans at the Health IT Expo conference. As a patient advocate, I believe that sharing patient stories are vital to improving the healthcare system.” Connect with the 2018 Healthcare Collaborator: Patient winner.
Chronic Illness Patient Leader
Jenni Grover is Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click here to learn more about Jenni and the Chronic Babe Community.
Arthritis Patient Leader
“I’m a patient gone professional. Every day when I come to work at the Arthritis Foundation, I get to translate my personal polyarticular JIA experience into advocacy action as the manager of Grassroots Advocacy. My passion is helping to elevate patient stories to the center of our health policy decisions. It is my mission to empower patients to embrace their story, remember that they are the experts in their care, highlight that their voice matters, and affirm that patients are central to building a better world for people just like them.” Connect with Julie.
Infertility & Family Planning Patient Leader
“Little did I know, 31 years ago, when I first started trying to become pregnant, that infertility and family building would become my life work. The disease of infertility is a thief, trying to rob us of the basic, fundamental right to have a family. It’s a disease that’s often dismissed as lifestyle, it’s often shrouded in shame. Like any other disease, we deserve insurance coverage, treatment, and support. I’ve advocated for ALL people who want to become parents, first through not for profits (Resolve and The American Fertility Association) and now with Reproductive Medicine Associates of Connecticut. I’m also a proud board member of Resolve New England. Click here to learn more about Lisa.
Danny van Leeuwen
MS Patient Leader
An action catalyst empowering people traveling together toward best health. Wears many hats in healthcare: patient with MS, caregiver, nurse, informaticist and QI leader. Current work focuses on communication at transitions of care, person-centered health planning, informed decision-making, and technology supporting solutions created by and for people at the center. Serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support Learning Network. Reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness Advisory Panel. Active in the Society of Participatory Medicine. Recently published in BMJ. Blogs weekly: www.health-hats.com Click here to get to know Danny.
Rare Disease Patient Leader
“I understand the challenges that Dysautonomia and Ehlers-Danlos Syndrome can bring from the perspective of the patient, advocate, caregiver, and nurse. I have combined my professional knowledge and personal experience to create a patient-focused, global support network that encompasses 65 support, and lifestyle clubs, created to improve the patient experience. As the President of the Dysautonomia Support Network, I have had the privilege to create programs such as DSN volunteer programs, scholarships and service dog grant programs. In 2018 have educated, raised awareness with researchers at the NIH, lobbied for research funding on Captial Hill and presented patient workshops at conferences.” Follow Amanda’s journey.
Rare Disease Patient Leader
“Hi, I’m Rachel and I am 31 years old and have been ill for 10 years with a rare condition called Pure Autonomic Failure where my bladder and bowel have failed to function. Due to this, I have 2 ostomies: an ileostomy and a urostomy and still am a regular inpatient due to recurrent sepsis. My blog is a platform to actively raise ostomy awareness and in particular urostomy awareness (the forgotten stoma). I talk about life with 2 stomas and work closely with stoma companies, Consultants, Nurses and Allied Healthcare professionals. I am passionate about being a voice for people who may have lost theirs to help improve patient care in the UK. I also support old and new ostomates.” Connect with Rachel.
Christine Von Raesfield
Lupus Patient Leader
“I’m an advocate for lupus and other conditions, I‘m involved with a local Nonprofit and have met with representatives from pharmaceutical companies to government officials. As one of the 2018 Team of Advisers for PatientsLikeMe. I am working with them on the new DigitalMe platform and have become a face of the campaign. While extremely involved in the lupus community, I also run the social media and host a monthly FB Live with the Lupus Foundation of Northern California. I was recently chosen to be a part of the steering committee for the EyeForPharma 2018 Conference. As a patient who has sustained toxic poisoning, I try to use my experiences to teach others to advocate for themselves.” Click here to learn more about Christine.
Daniel G. Garza
HIV/AIDS Patient Leader
HIV/AIDS Advocate, with a focus on education in prevention, since 2001, after being diagnosed in September 2000. First by educating his family and the Latino community, most recently high schools, colleges, and universities in Orange County California. With his podcast “Put It Together”, launched in 2012, now with over 200 episodes, where he talks to people from different backgrounds on their journeys through health, recovery, and life. Daniel has been a member of several committees; Ryan White Planning Council, Laguna Beach HIV Advisory Committee and Advisory Committee to HealtheVoices 2018. Where he was able to present a workshop on podcasting as well as host a Latino breakout session. Learn more and follow Daniel.
Claire Snyman is an author, blogger, and advocate for patient and healthcare collaboration. She is passionate about inspiring people to put their health in their own hands. Since being diagnosed in 2010 with a non-malignant brain tumor and brain surgery in 2012, she realized the importance of partnering with her healthcare team and becoming her body’s own advocate. She co-authored a scientific study between neurosurgeons and patients and is working on a second study on GBM. She has developed a TEAM Approach for Empowering patients – all with the end goal of achieving better patient outcomes. Claire recently spoke at TEDxStanleyPark 2018 on “putting your health in your own hands.” Connect with Claire.
Don’t forget, we all start somewhere! Making keynote speeches at conferences isn’t necessary to make an impact. Check out the Top 10 Rookie of the Year Patient Leaders to get inspired by those just beginning their advocacy journey.