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
To The Teenager Recently Diagnosed With A Chronic Illness, I know it was quite a shock to you, having been thrown into the
During 3rd grade, we moved and Abby transferred to a new school. My biggest fear was starting over with a new set of teachers
Every year Rare Disease Day takes place across the world and brings together anyone affected by a rare disease, patients, their families and caregivers. It also serves to raise awareness of rare diseases among policy makers, industry, researchers and health professionals.
It is hard enough to be a teenager trying to figure out what you want to be when you grow up. Adding on a chronic illness makes that 10 times harder.
Family time, as it is for many people, used to be limited to nights and weekends. We now get tons of time together, but our days like this are quite literally numbered. Each new day is a step backwards for my daughter.