Gorlin Syndrome Alliance (GSA)

In 2020, after an in-person regional conference in february in phoenix, the Gorlin Syndrome Alliance (gsa) shifted its work to be fully virtual due to the covid-19 pandemic. This included the addition of virtual community group meetings by age and gender, quarterly virtual town hall meetings, and a virtual national conference held in october. This was very successful and included educational talks by medical professionals on many of the issues that people with Gorlin Syndrome face.

Staff was hired to validate the patient database by making individual contacts with those listed to update their contact information. A portion of this work was funded by a $15,000 donation from genentech specifically restricted to this purpose. $1,472 of the expense shown above was specifically allocated to the genentech donation.

The gsa also conducted a 90-minute listening session in november for the u.s. food and drug administration to further educate them on Gorlin Syndrome, its burdens and the unmet needs of the community.

In oct 2021 gsa convened a patient-focused drug dev mtg to educate the fda and others on how Gorlin Syndrome impacts the lives of those impacted by the sy

Gsa maintains and validates a patient database by making individual contacts with those listed