Rare Disease Patients Unite

30 million Americans live with rare diseases.

Rare disease patients have an important message to health care leaders and policymakers.

“We’re here. We’re ready. We’re willing,” says Paul Melmeyer with the National Organization for Rare Disorders.

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.

The latest about patient advocacy

Join our Email List

Get notified about new stories and resources to empower patients and caregivers.