We know that caring for the whole person includes supporting emotional health. Recent research shows that many adults with FA and caregivers experience high rates of anxiety, depression, and post-traumatic stress. These challenges affect well-being and long-term health, as well as participation in research. We also know that there are many barriers to accessing quality mental health, let alone providers that understand FA. We’re committed to addressing this need by making mental health support more accessible for our community.
Quick Link: Access Support Here
Our Partnership With Give An Hour
To advance this commitment, FCF has partnered with Give An Hour (GAH), a national nonprofit dedicated to expanding access to no-cost mental health care and education.
What This Means for You
- Access to care: Adults with FA and caregivers can connect to trained mental health providers through self-referral, referral from FCF, or referral from peer support volunteers.
- Peer support: GAH is training FCF volunteers in trauma-informed peer support, designed specifically to the rare disease community.
- Resources and education: We’re working with GAH and FCF advocates to develop an FA-tailored mental health toolkit and educational materials.
- Rare-competent providers: GAH plans to train mental health professionals nationwide to better understand and support individuals and families affected by rare conditions.
See a message below from Julie Wells from Give An Hour:
Our Vision
This partnership is part of FCF’s broader commitment to improving quality of life for every person with FA and their caregivers. By addressing emotional well-being alongside medical care, we’re helping to build resilience, strengthen families, and ensure that no one faces FA alone.
Access Support by Clicking Here
Interested in becoming a trained FCF peer support volunteer? Contact communitysupport@fanconi.org.
