This Saturday, February 28, marks Rare Disease Day, a coordinated global effort to elevate and amplify rare disease advocacy around the world. While 1 in 10 people live with a rare disease, only 1 in 31,000 are affected by Gorlin syndrome.
Rare Disease Day is an opportunity for our community to come together, raise awareness, and ensure that Gorlin syndrome is part of the global conversation. Every voice matters, and every story helps build understanding.
We invite our community to raise awareness about Gorlin syndrome by wearing stripes, sharing your story and lifting our entire community through your advocacy and support. If you wear stripes, take a photo and tag us so we can celebrate and amplify your voice. Every post helps raise awareness and reminds others that rare is everywhere.
Our 2026 Research Grant Program will close this Monday at 11:59 PM. If you are a clinician or researcher working to improve quality of life for people living with Gorlin syndrome, there is still time tosubmit a proposal.
We will also begin contacting those who volunteered to serve on our Community Grant Review Committee in the coming month. It is not too late to join, if you would like to participate in helping us identify the projects that will have the greatest impact for our community.
Update: Transition to the Natural History Study
Following our January update, we want to share where we are in the transition from the formerly named Gorlin Syndrome Alliance Patient Registry (GSAPR) to the newly named Gorlin Syndrome Alliance Natural History Study (NHS), and what this next phase means for our community. The updated platform will have a new look and feel, making surveys easier to complete and the system more user-friendly to navigate. We are currently in the final stages of testing and expect to officially switch to the new platform within the next few weeks.
This transition is an important step forward, allowing us to build on the valuable information already collected while creating a stronger, more flexible foundation for future research. All data collected through the GSAPR will remain intact and will be securely migrated to the Natural History Study platform. If you have already enrolled or completed surveys, there is no need to start over—your time, effort, and contributions are protected.
For those newer to the concept, a natural history study is a way to understand how Gorlin syndrome affects people over time—based on real-life experiences. By collecting consistent, long-term data, researchers can identify trends, gaps in care, and priorities for future studies. The more patients who participate, the more complete the picture becomes: more patients lead to more data, and more data drives more impactful research.
We’re excited to share more updates with you soon!
There was great turnout at our January support group with Dr. Al! Thank you to everyone who joined for the first sessions. It is a joy to connect with not only our brothers and sisters from here in the US, but with members of our international Gorlin syndrome family, too! As always, everyone is welcome here.
April 8th at 1 PM EST – Support Group for caregivers, parents, guardians, and partners
April 9th at 1 PM EST – Support Group for adults living with Gorlin syndrome
*Our community groups will continue to meet on off months from Dr. Al’s support groups. These are peer led, and provide another opportunity to get to know the GSA family.
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