Through the Peer Connect Program, you can talk with one of our Peer Coaches, who are trained Gorlin syndrome patients or caregivers and longstanding members of our community. These coaches can help reduce patient anxiety and uncertainty while providing unbiased treatment and disease knowledge.
Peer Coaches will support and listen to you as you face a diagnosis and day-to-day life with Gorlin syndrome. Peer Coaches are there when you have a question, concern or crisis. Typically, Peer Coaches will connect with you via email, phone calls or social media.
Some topics our Peer Coaches are able to discuss and provide input include:
- Building & managing your medical team
- Their experience with Gorlin syndrome
- Clinical trial experience
- Advocating for your child with Gorlin syndrome
- Gorlin Syndrome Alliance resources & involvement
- Developing a treatment plan
- Psycho-social concerns
- Manifestations of Gorlin syndrome
- Living with a rare disease
- Educating your family
Click here to connect with a Peer Coach!