Rare Disease
Rare Disease
In this page, you'll find information and resources on rare disease.
Information and Resources on Rare Disease
- Book - Special: Antidotes to the obsessions that come with a child's disability
- Dougy Center
- Getting beyond “Why me?”
- Global Genes 2022 RARE Patient Advocacy Summit
- Librarey: Resource guide
- Once Upon A Gene Podcast
- Rare Disease Films - Roku or Amazon Fire
- Tips for Those-Newly Diagnosed
- The Circle of Care Guidebook for Caregivers
- Understanding the Emotional Health of Rare Disease Patients
Community Resources on Rare Disease
- Angel Aid - Support for rare mom caregivers
- Courageous Parents Network
- Mejo: Support for parent caregivers
- RARE Concierge