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Children with rare diseases 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 in a world where no one is even looking for a cure?
The Ryan Foundation exists to find, then fund researchers with novel science that can lead to actual treatment of Rare Disease; with a specific emphasis on Mucopolysaccharidosis (MPS) and other Lysosomal Storage Disease (LSD). The Ryan Foundation works hand-in-hand with National and State legislators to build a stronger partnership between government, research science, and the individuals and families living life with MPS and all Rare Disease. The goal of the Ryan Foundation is to secure a better future for both the families living with the pain of Rare Diseases today as well as tomorrow’s generations.
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