Experiences
In the company of
heroes, dreamers, advocates, guardians, researchers, allies, families, fighters, groundbreakers, rare.
Hear from others like you.
Cheryl
X-linked Hypophosphatemia (XLH)“Having a rare disease, I can’t control my symptoms, but I can control my attitude.”
Tasia
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“I see kids who are struggling the same way that I did, and just being able to be a beacon of hope for them, that in itself really helps me.”
Dan
Dan
Tumor-induced Osteomalacia (TIO)“At 50 years old, I was a healthy, strong workaholic until everything changed.”
David
X-linked Hypophosphatemia (XLH)“My condition did not limit me prior to the diagnosis, and I was determined that it would never hold me back.”
Eileen and John
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“My biggest challenge is slowly, but surely, letting my teenager take over his own care. I don’t know what the future will bring, but it is my duty to help him be independent.”
