rare disease

"This is Rare Disease Week and I learned the hard way ... that most medical folks haven't encountered them and simply won’t be able to help when issues arise."
Two-year-old Maxwell Freed has a rare genetic disorder. His mother needs $1 million to save him.
Amber Olsen is racing against time to fund a gene therapy that might save her dying 5-year-old from a rare genetic disease.
The Beauty of Rare project also shows what it's like to care for someone with a rare condition.
A diagnosis like mine is only the beginning of an endless racetrack.
"Keep telling your story and eventually someone will listen."
“I realized that if I didn’t dedicate the rest of my life to trying to cure this disease, that no one else was going to do it."
As a 12-year-old child, before I was diagnosed, I locked myself in the bathroom at the hospital because I was afraid of getting
Mitochondrial Disease Awareness Week is celebrated by people globally, during the third week of September. Every year thousands
“The unknown is scary. I don’t know if my daughter will ever live a normal life, free from pain and misery. I want her to