Our History

The Gorlin Syndrome Alliance began with just a few U.S. patients determined to break the isolation of having this rare disease, so that no one ever felt alone. These efforts have blossomed into a global network with a unifying value of improving the quality of life for everyone affected by Gorlin syndrome. Our network now includes clinicians, researchers, and pharmaceutical companies, with the GSA at the center, through which to facilitate community connections, education, and most importantly, drive scientific research and therapeutic innovation. 

How It All Began

In 2000, Jenni Werkmeister and her mother, Barb Rogers-Oberski, set out to create a U.S. support group for people with Gorlin syndrome. Encouraged by Dr. Robert Gorlin, the physician who helped identify the condition, Jenni and her mother connected with others, including Kristi Schmitt Burr and Bud Caruso. Together, the three patients set in motion plans to build patient support programs and build the first organized U.S. network for Gorlin syndrome, inspired by the example of patient groups in the U.K.

Building a Community

In 2001, the network hosted its first member meeting in Ohio. For many, it was the first time meeting someone else with Gorlin syndrome. This experience brought both comfort and confidence to people who had previously felt isolated. “You are not alone,” became the welcome message to all new members of our community, a powerful phrase you will still see repeated in our online circles. From there, the community grew quickly, supported by creative programs, family gatherings, and online connections that linked patients, families, and medical experts. Today, the Alliance reaches more than 900 families worldwide.

A New Chapter

In 2018, the organization was renamed the Gorlin Syndrome Alliance to reflect its growing partnerships among patients, families, clinicians, researchers, and advocates. While much has changed since those first conversations, the mission remains the same: to provide strong support and to advance science and research that will improve lives.