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November Newsletter 2025
As the holiday season officially kicks off and we transition into the excitement of December, we wanted to take a moment to look back and share some of the impact we made together this past month.
Here is a look at some of the highlights from November:
The BCC Guidelines are out!
Clinical Practice Guidelines for the Management of Basal Cell Carcinoma in Gorlin Syndrome have officially been published online by the Journal of the American Academy of Dermatology (JAAD). Funded by a grant from Gorlin Syndrome Alliance (GSA), this important body of work represents a significant advancement in care for individuals living with Gorlin syndrome (GS). The volume of basal cell carcinomas that people with Gorlin syndrome have presents a unique problem in the clinic, and medical literature did not previously provide substantive guidance on how to approach care. The Guidelines are designed to help guide the decision making process between patients and healthcare providers.
We encourage you to share these Guidelines with your or your loved one’s healthcare provider:
GSA initiates partnership with Medicus’ SKINJECT
A LinkedIn message from Julie Breneiser, GSA Director of Pharmaceutical Relations, helped spark conversations with Medicus Pharma about potential expanded access to their non-surgical SKINJECT treatment for BCCs, and led to an interview with a journalist from Clinical Leader. While this potential opportunity will unfold slowly, we commit to keeping you informed as details become more clear. For now, we are proud to share one of our successes in making contact with pharmaceutical companies who may not know about Gorlin syndrome, but have a product that could potentially provide relief to our community. We are committed to pursuing better therapies for BCC in Gorlin syndrome at every level.
From the GSAPR Desk:
What’s a Natural History Study — and Why Is It Part of the GSAPR?
You may start seeing the term natural history study connected to the Gorlin Syndrome Alliance Patient Registry (GSAPR). One of its purposes is to track health information over time and better understand how Gorlin syndrome affects patients at different stages of life. Nothing changes for you as a participant; it’s still the same GSAPR you know. The updated terminology simply reflects the long-term learning we’ve always aimed for.
By following patients over months and years, the data can reveal important trends, improve care, and strengthen future research and treatment efforts. It’s all about building a clearer, more complete picture of the patient journey.
If you’re already enrolled in the GSAPR: Natural History Study, thank you! Don’t forget to log in periodically to record new events or update any changes.
If you haven’t enrolled yet — or started but didn’t finish — now is the perfect time. Once you complete enrollment, you’ll receive a $75 Amazon gift card. Perfect timing for the holiday season!
In Case You Missed It:
Dr. Al, as he is known in the rare disease community, is a psychologist who has personal and professional experience with the mental health impact of rare disease. Dr. Al will be leading sessions for our whole community in 2026. The dates for the first support groups are:
- January 14th at 1PM EST: for caregivers, parents, guardians and partners.
- January 15th at 1 PM EST: for adults who are affected by Gorlin syndrome.
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