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.

Together We Can Change Lives

7000

Types of Rare Diseases

350

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

How can we help?

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