Mission
Harness the power of sport to build a community that invests in the lives of people impacted by rare diseases.
Vision
No person impacted by a rare disease feels alone and everyone is inspired with hope for the future.
Core Values
Integrity.
Collaboration.
Empathy.
Passion.
Our Why
1 in 10 Americans will be diagnosed with a rare disease
A rare disease is one that affects fewer than 200,000 Americans at any given time.
There are more than 10,000
different rare diseases that collectively affect more than 30 million Americans.
Rare diseases are often chronic, progressive, degenerative and life- threatening.
30%
of children with a rare disease will not live to see their fifth birthday.
50%
of rare diseases affect children
Key Leadership
Current Chapter Leaders
Staff
Board
Scientific Advisory Council
