Have you ever wished for a better treatment for Gorlin syndrome? Are you sometimes disappointed with how “slow” the research moves? By participating in the GSAPR, you are helping fuel the research process! Investigators working within Gorlin syndrome will now have access to a pool of information they need to achieve medical breakthroughs.
The GSAPR, also known as a Gorlin Syndrome Natural History Study, will become the comprehensive national registry for Gorlin syndrome. The GSAPR is designed to house all Gorlin syndrome patients in the US in one location in their entirety. The GSAPR will replace and supersede all other existing Gorlin syndrome registries, including CHORI, Stanford, and the BCCNS Patient Registry established in 2018 when the Gorlin Syndrome Alliance was previously known as the BCCNS Alliance.
The GSA has created a Frequently Asked Questions section that will answer many of your inquiries and provide more details about the enrollment process. If you would prefer to speak with someone on the GSAPR Team, please <<email – email@example.com>> or call the national office at 267.689.6443.
The GSAPR will be hosted in partnership with the National Organization for Rare Disorders (NORD); an independent non-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations who serve them. The GSA will provide periodic updates and results with the discoveries made possible with this impactful data.
If you are a patient, or the primary caretaker of a patient living with Gorlin syndrome, we encourage you to share your experience by enrolling the GSAPR.
CLICK HERE to enroll today!