What is an orphan disease?

An orphan disease is any disease or medical condition so rare in occurrence it receives little or no research as to its cause or cure. While the definition of what constitutes "rare" ranges by geography and professional discipline, the fact that 30 percent of children who contract an orphan disease will die before reaching the age of five years old is undisputed.

We're helping win the race.

We're helping children win the race.

Children with an orphan disease are racing the clock from the moment they're born. Imagine hearing the news as a parent that your child has a disease that will end their life in only a few short years. Now imagine being told little research for the disease exists because it wouldn't generate enough profit for a drug company to pursue. It's a literal race against time for your child and disease has a huge head start. How do you get your child out of what seems a hopeless situation? Where do you go in a world where no one is even looking for a cure?

For more and more parents with children facing an orphan disease, they come to The Ryan Foundation. We don't have cures, but we do know how to find funding and research that at the very least provides the one thing every child and parent should have: hope.