Community Health Leaders
In order to stay up to date on the latest treatments, drug discovery, clinical studies, and how to cope with rare disease every day, RareDisease.net 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.
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.
Elle Cole
Elle Cole is a mom of twin daughters. After she and her husband learned their daughter had sickle cell disease, she wished there was a guide to help parents and kids understand more about how the condition affects a person's body. 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.
Michelle Fruhschien
Michelle here- aka Mamabear. My 3-year-old daughter, Hailey, was diagnosed at 8 months of age with a rare diagnosis, Jordan's syndrome, a random mutation of the gene PPP2R5D. At the time of her initial diagnosis, they were under 200 people globally with the same diagnosis. Read more.
Alex Gaudlap
Alex Gaudlap is based in New Jersey, right outside of Philadelphia. Alex is one of the many people that did not plan to be part of the rare disease community but has found her true passion through it. 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.
Erin Leibowitz
Erin Leibowitz is a writer and patient advocate who was diagnosed with metastatic pancreatic neuroendocrine cancer shortly before her 30th birthday. Neuroendocrine cancer, also known as NET cancer, is a rare, incurable cancer. Read more.
Jake Marrazzo
Jake Marrazzo is a writer, author, and patient advocate living with Duchenne muscular dystrophy. He was diagnosed at 8-years-old, and was in a wheelchair by age 12. Since then, he has been living with the loss of arm, heart, and lung strength that comes with this disease. Read more.
Jesse Mercury
Jesse Mercury is the host of the Major Pain podcast, where he interviews people living with chronic illness and disability. The goal of the show is to create community around experiences often lived in isolation, while spreading awareness of rare diseases. Read more.
Gina Miller
Gina is an advocate for late-diagnosed cystic fibrosis (CF) patients, and CF related-disorders, plus various other disorders she has been navigating along her healthcare journey. Read more.
Shannon Stratton
Shannon Stratton is an artist and research administrator who was born with X-Linked Hypophosphatemia and diagnosed with Rheumatoid Arthritis at 18. Instead of letting illness define her, Shannon chose to redefine what it meant to live with it. She has become a passionate advocate and has worked with numerous non-profits in the Boston area on disability advocacy. 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.
Dwayne Wilson
My name is Dwayne Wilson and I have Late on-set Pompe Disease. Pompe, it's in my DNA, I was diagnosed with the Rare Inherited Genetic Muscle Weakness Disease when I was 50 yrs old in Nov, 2018. I have 2 gene mutations resulting in my body's lack of producing the GAA enzyme to break down and process glycogen in the muscle cells. My Super Power is now Smashing Pompe and ridding the World of the Glycogen Monsters! Read more.
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