This session discusses common mental health challenges faced by adults living with FA and recommendations for advocating for mental health needs with primary care teams.
The NIH Center Comprehensive Program for Surveillance of Squamous Cell Carcinoma in Patients with FA
Video
Neelam Giri and Sharon Savage cover a brief description of the protocol to prospectively evaluate and follow patients with FA at high risk of SCC with screening at regular intervals.
As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models & taking ownership of their own care