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. Advocating doesn’t have to be a one woman/man show. This category is for those teams who work better together. Whether it be a group that runs an online chat, a non-profit organization, or a caregiver and patient duo – these teams take their activism to new heights because of the assistance from one another.
100 Days of Vitamin Sea | Beth Francis & Andy Clark
Chronic Migraine Patient Leaders
After Beth was diagnosed with chronic migraine, she and partner Andy set a challenge “100 Days of Vitamin Sea”- based on research that being active in nature can be extremely beneficial to health and wellbeing. They’ve filmed throughout their journey and shared some of the highs and lows on social media. They’re creating a feature-length film showing the realities of chronic illness and the benefits of nature-based wellbeing. The experience has given them the opportunity to advocate and share on national TV the realities of this disease. They are also in the processes of helping to run a research study to see how they can adapt what they’ve found to help others migraineurs. Get inspired by the 2018 WEGO Health Awards Best Team Performance winners.
The Frey Life
Cystic Fibrosis Patient Leaders
We are daily vloggers on YouTube showing the ups and downs of everyday life with Cystic Fibrosis! Encouraging our viewers to find ways to laugh every day, it’s our aim to show both the hard realities of chronic illness as well as the joys that can be found along the journey! Connect with The Frey Life.
AME- Amigos Múltiplos pela Esclerose
MS Patient Leaders
AME was born to make people with MS have a better life. Since then, abides by the principle that #InformationIsTheBestMedicine. Also, dedicates itself to help in early diagnosis, bring out consciousness regarding symptoms and real-life aspects about who lives with MS. We are an association that is concerned with the quality of information, so our services are all digital and there for free. We do content curation and encourage the patient’s empowerment so he/she can seek post-diagnostic quality of life. Learn more about AME.
Central Pain Nerve Center
CPS Patient Leaders
“We, Becky Brandt, RN & Lisa Davis Budzinski, started the CPNC to share comprehensive medical information about Central Pain Syndrome & other intractable pain conditions. As CPS patients, we offer a first-hand perspective on medications, treatments, & resources for living with Central Pain Syndrome. We find it extremely important to assist & support others going through their own pain journeys. We know how difficult life can be with intractable pain, so we offer comprehensive medical information and decades of collective knowledge. Aside from information about health care, medications, doctors, and treatments, we’ll offer a fresh perspective on daily living well with CPS and chronic pain.” Learn about the Central Pain Nerve Center.
Mentally Aware Nigeria Initiative
Mental Health Patient Leaders
MANI is a registered non-profit organization (CAC/IT/83725), focused on breaking the silence and alleviating suffering for Nigerians, young and old, living with mental illness. In two years of existence we have grown our following on social media from zero to more than 20,000, with impressions from our posts of more than twelve million while Educating thousands of Nigerians on the reality of mental illnesses as well as the basics of most of the common ones seen in our environment, both online (using targeted social media campaigns) and offline (using various psycho-education programs organized across more than 10 states in Nigeria). Find out more about MANI.
Jo Grey & the AMEND Team
MEN Patient Leaders
The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumors. AMEND is run by patients, for patients.
“I’ve been involved with AMEND since shortly after being diagnosed with MEN2A in 2000 after narrowly surviving a large adrenal tumor, and subsequent tumors and cancer. A born optimist, I quickly discovered the need to speak and help others with the conditions, and now do so as a major part of my full-time work for AMEND which incorporates patient contact by phone, email, social media and in person at hospital appointments and AMEND events. I like to keep our events as fun and informal as practically possible in order to enable patients to feel comfortable enough to participate fully. My job is incredibly varied and demanding but ultimately hugely rewarding.” Learn more about AMEND.
Critical Mass: The Young Adult Cancer Alliance
Cancer Patient Leaders
Critical Mass: The Young Adult Cancer Alliance is a community-powered 501(c)3 advocacy organization that brings together patient, provider, and policymaker to remove barriers faced by young adults after a cancer diagnosis. Connect with Critical Mass.
Dysautonomia Support Network
Rare Disease Patient Leaders
Dysautonomia Support Network is a US-based 501 (c) 3 organization that provides support, resources, education and awareness globally to those affected by Dysautonomia, Ehlers-Danlos Syndrome, Chiari Malformation, Gastroparesis, Mast Cell Disorders and other related conditions. We provide support 24/7 in person, in state chapters across the US and internationally on Inspire and in our 55 Facebook support groups and many DSN Lifestyle Clubs. We are a patient-focused, volunteer-run organization. Learn more about the network.
Barby Ingle & the iPain Team
Chronic Pain Patient Leaders
Barby is an advocate for PTs w 150+ Chronic & Rare Diseases | Pres. International Pain Foundation (vol position) | Best Selling Author | Reality Personality | Cheerleader of HOPE *\O/* | Dx: RSD, Seizure Disorder, TMJD, Hypothyroid, Dystonia, PALB2-Var, & other conditions.
She mentors patients daily & is hands-on as a volunteer for iPain, Reality Rally & many coalitions. As an advocate, Barby works w pain PTs, caregivers, healthcare pros & public worldwide for proper & timely access to care. Unfortunately, so many other patients experience similar challenges, so she shares her knowledge of overcoming the challenges so their journey will be easier than the hardships she has faced.
The International Pain Foundation is devoted to advancing access and quality care in order to help people suffering from a variety of inflammatory, neurological, emotional and degenerative conditions that involve chronic pain through education, awareness, and access to care projects. Learn more about Barby and iPain.
Kegoye Boys Drama Team
Sickle Cell Disease Patient Leaders
Looking for some new inspiration in your Twitter feed? Take a moment to like and follow these Top 10 Best in Show: Twitter Patient Leaders.