Newly Diagnosed

Newly Diagnosed

Recently, you learned that you or a loved one have Gorlin syndrome. Most likely, you have many questions about your new diagnosis, the next steps and what the future has in store. That’s why we are here. The Gorlin Syndrome Alliance works to support individuals with Gorlin syndrome and their families to ensure they live full, rich, and happy lives.
Here are just a few of the many ways we can help:

  • Learn more about the syndrome. Gorlin syndrome has many different types of manifestations. It’s important to review the many manifestations to see if there are any other areas of concern. It may also be helpful to share the management protocol with your medical team.
  • Find a physician. Our Physician Referral Listing is a library of knowledgeable physicians throughout the United States. Contact the office to find a dermatologist or oral surgeon near you.
  • We have a network of knowledgeable volunteers available to answer your many questions. Our Peer Connect coaches are long-time members of the Gorlin syndrome community. A quick call or email with a Peer Coach can help provide some guidance and reassurance during this time of uncertainty.
  • There are lots of promising research studies and clinical trials happening in the field of Gorlin syndrome and BCCs. We have some of them outlined on our Research Page. You can also check out the current Clinical Trial site to see if you or a family member are able to participate in any ongoing trials.
  • The Gorlin Syndrome Alliance offers several opportunities for you to meet face-to-face with the leading physicians in Gorlin syndrome care and other members of the Gorlin syndrome community through our One-Day Regional Meetings or our bi-annual National Conference. Visit our events calendar to see our upcoming events.

Do you have an immediate need or question? Contact the Gorlin Syndrome Alliance office by calling (267) 689-6443.

Be sure to connect with the Gorlin Syndrome Alliance by completing this quick contact form. By providing us with your information, you will receive updates from the office about the latest research, clinical trials and in-person meetings, among other announcements.