Connecting Rare Disease Patients

We connect rare disease patients through Facebook group, and email.  Sign up for our email list today and connect with other rare disease patients.

Listen to Our Conversations

Dive into our latest podcasts to hear from experts and community members sharing valuable insights on rare diseases. Each episode brings you closer to understanding and support in the world of rare health conditions.

Episode: Hypohydrotic Ectodermal Dysplasia From Oregon