Our Programs

We are here to help.

Join Facebook Groups

We have 2 Facebook groups to support families. One only supports caregivers, the other is for friends, family, doctors, and researchers.

Patient Registry

We partner with Rare-X to bring our patient data together collaboratively.

Rare Birds is committed to supporting families. Check back to learn more about our efforts in the new year.

COMING IN 2025

Stay connected by joining a monthly Zoom meeting. Details can be found through our Facebook Group.