Dear Community Member,,

This is an extraordinary time for our community. We have reached several long-held goals, including bringing a scientist on board to guide our work and taking our stories directly to lawmakers on Capitol Hill. On the therapeutic front, we are seeing increased interest and innovation in developing more non-surgical options to treat basal cell carcinomas in Gorlin syndrome, and we look forward to sharing those updates as they become available.

Our Research Grant Program has now reached its fourth year, and we look forward to announcing this year’s recipient next month.

Stay tuned, and as always, thank you for everything you do to make this work possible. Whether through participation in clinical trials, the GSA Natural History Study, sharing your experience through storytelling, grant reviewing, peer-to-peer support, advocacy, or making a gift to the GSA—each of you is making a difference, and we are excited to see what comes next.

Featured News

Catch up on the latest Gorlin syndrome related updates and articles.

GSA on Capitol Hill

Earlier this month, GSA staff joined conversations with senior lawmakers across key healthcare committees on Capitol Hill to help advance support for opening FDA pathways that could bring new therapies to our rare disease community. Partnering with industry helps amplify shared priorities and messaging.

These meetings focused on the impact of the disease and the importance of developing non-surgical therapies for basal cell carcinomas in Gorlin syndrome. Bringing the patient perspective into conversations with leaders directly shaping rare disease policy helps ensure those decisions reflect real-world experience.

Our meetings included:

• Brett Guthrie – Chair, House Energy & Commerce Committee
• John Joyce – Member, House Energy & Commerce Committee; Co-Chair, Congressional Skin Cancer Caucus
• Diana Harshbarger – Vice Chair, House Energy & Commerce Subcommittee on Health
• Gus Bilirakis – Co-Chair, Congressional Rare Disease Caucus; Senior Member, Energy & Commerce Committee

Q&A with Dr. Cahn

Dr. Brian Cahn, who led the panel developing the new clinical guidelines for basal cell carcinoma (BCC) in Gorlin syndrome, recently spoke with Physician’s Weekly about what this work means for patients and providers. His perspective reflects a deep understanding of the long-term realities of living with Gorlin syndrome—and the need to treat the whole person, not just individual tumors. 

Nicole Doudican, PhD to Draft First GSA Research Roadmap

Nicole Doudican, PhD, recently joined the GSA to help lead the development of our first Research Roadmap. The Research Roadmap will define priorities and guide a coordinated strategy to help researchers, clinicians, and industry partners focus on the opportunities that matter most to patients and families.

Join the Town Hall this Sunday, May 3rd, to hear from Nicole and learn about the Research Roadmap. Details below.

Community Spotlight

Stories connect us human to human and transcend our roles as patients, parents, and physicians. They bring us together as a community and move hearts and minds beyond it.

This month, we are featuring Addison Huff.

Addison's story is a reminder of both the individuality and the shared threads in how Gorlin syndrome is experienced and how much there is to learn from one another.

Thank you, Addison, for sharing your voice!

Coming Up Next...

We hope you will join us for our upcoming Town Hall. This quarter, we will focus on opportunities for children and families, including:

• A conversation with Camp Wonder about their summer program
• Updates on the Gorlin syndrome children’s book
• An introduction to our research roadmap consultant, Nicole Doudican, and how you can contribute

In Case You Missed it:

Camp Wonder: This free, week-long summer camp (June 13–19, 2026, in Rutledge, GA) for children ages 6–16 with chronic skin conditions, including Gorlin syndrome. Hosted by the Children’s Skin Disease Foundation, it includes travel and provides a supportive environment for kids to connect, build confidence, and enjoy being kids; apply by May 15, 2026.

Community Voices Videos:

We recently shared two videos that highlight what it’s like to live with Gorlin syndrome and why research is so important. One focuses on the ongoing treatment burden and gaps in care, while the other explores daily life across different ages and underscores the role of clinical trials in advancing better options.

Clinical Trials: If you are interested in participating in clinical trials, we invite you to visit our website to see what opportunities are currently open and reach out to our team if you would like to learn more about what may be ahead.

Community Group Meetings:

Dates for May 2026

Women- May 12

Parents- May 14

Affected Adults- May 21

All groups meet on Zoom at 8PM EST