The global alliance of persons living with a rare disease
Leading global advocacy and connecting communities to advance equitable and inclusive outcomes for people living with rare conditions and their families
145+
Member Organizations
150
Countries represented
1
Strong Collective Voice
What we Do
Lead Awareness and Advocacy at the Global Level
Advance Improvements in Diagnosis, Treatment & Care
Engage and Strengthen the Global Rare Community
A global community, working together
Our members are organizations led by people living with a rare disease, their family members and caregivers.