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Our Programs

We are here to help.

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Hospital
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. 

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COMING IN 2024

Direct Patient Support

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

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COMING IN 2024

MONTHLY ZOOM

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

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