Community Health Leaders

Last updated: March 2023

In order to stay up to date on the latest treatments, drug discovery, clinical studies, and how to cope with rare disease every day, brings you frequent articles, points of view, and advice from leading health leaders and experts.

Current Health Leaders

Natalie Abbott

Natalie Abbott was diagnosed with Moebius syndrome, a rare neuromuscular movement disorder, at birth and with rare autoimmune diseases throughout childhood. When not working as a librarian, writer, and freelance social media manager. Read more.

Judy Adkin

IGA Nephropathy changed my life in 2019. After learning more about the disease, I wanted to avoid dialysis as long as possible, so I went on a plant-based low sodium diet. That, combined with a steroid medication, I stabilized at a kidney function of 40 to 44%.

Ella Balasa

Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis. She was diagnosed at 18 months old and has experienced countless hospitalizations since being a child. She has committed her time to empowering patients and advancing research and healthcare strategies through her connections with researchers, pharmaceutical companies, and patient organizations. Read more.

Tatiana Corbitt

Tatiana Corbitt is a person living with Narcolepsy Type 1. She graduated with her Master's degree in Applied Biological Sciences and is currently working on her debut novel. The main character of her book has narcolepsy. Read more.

Shawn Decker

Shawn Decker is an internationally recognized health educator who has spoken to over 100,000 college students across the United States. After graduating from high school, he created one of the first blogs on the internet. Shawn has served as a board member for the MTV Staying Alive Foundation and has written for POZ Magazine. Read more.

Annie-Danielle Grenier

I raise awareness, educate and advocate for people living with rare and invisible diseases, having a few myself. I have hypermobile Ehlers-Danlos syndrome, autoimmune polyendocrinopathy (type II) and an unspecified systemic autoinflammatory disorder, along with over a dozen comorbidities, some of which are rare as well like gastroparesis or corneal ectasia. Read more.

Jessica Hanson

Jessica Hanson is a NYC-based actor, singer, yoga teacher, fitness instructor, social media manager, writer, blogger, autoimmune disease advocate, and cat lover. Read more.

Jenny Jones

Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). She was diagnosed with FAP in 1994 at age 8, but not without hurdles. Her PCP refused a GI referral for evaluation of chronic abdominal pain, stating Jenny was "just a whiny child", requiring her parents to change insurance plans to obtain a GI specialist evaluation. Read more.

Dusty Terrill

Dusty Terrill is a nature-loving and adventure-seeking travel advisor, rare disease advocate, writer, and research participant at the National Institutes of Health. Read more.

Previous Health Leaders

Frank Rivera

I am Frank Rivera, a rare disease patient advocate, an Illumina Ambassador, A RDLA Patient Advisory Council Member, a pharmaceutical advisory member and ambassador,a speaker for the rare disease community as well as a patient of Sarcoidosis, I also have Sjogren's Syndrome, IBS, MS and Parkinson's. Read more.

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