Two-year-old Maxwell Freed has a rare genetic disorder. His mother needs $1 million to save him.
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."
To The Teenager Recently Diagnosed With A Chronic Illness, I know it was quite a shock to you, having been thrown into the
Over the past 2 years, we have had more support than I could have ever asked for. The teachers, parents and students participate
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.
My husband and I can't help but wonder if we're doing the right thing. Given the normal course and degenerative nature of Sanfilippo Syndrome, now is Eliza's best time to actually be able to do things out in the world. With our decision to not go out, we are taking those experiences away.