WHO
We Are
We are advocates, partners and collaborators who are relentless in our efforts to affect change.
WHY
We Do It
To eliminate the daily challenges for 1 in 10 people affected by rare disease.
WHAT
We Do
We empower patients, build communities & drive forward momentum for rare disease globally.
What's New
Why Payers Lag Drug Developers and Regulators in Embracing Real-World Evidence
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Together We Can Change Lives
7000
Distinct Types of Rare and Genetic Diseases
400
Million People Suffer From a Rare Disease Globally (greater than the population of the U.S.)
3of10
Children with a Rare Disease Won’t Live to See Their 5th Birthday
1of 2
Patients Diagnosed with a Rare Disease is a Child
