Gorlin Syndrome Alliance

Can you hear the hooves??Rare Disease Day is fast approaching! Tomorrow, the rare disease community unites across the globe to raise awareness of the critical unmet needs faced by many people living with rare conditions. At NGOtiate - https://www.ngotiate.com/ -, we are proud to support the important cause and contribute to the wealth of educational initiatives happening on this very special day. To that end, I have the honor of hosting a conversation with three incredible patient leaders: Julie Breneiser, Meredith Weiss from the Gorlin Syndrome Alliance in the US, and Suzanne Edel von Seitzberg from the Lichen Sclerosus Association in Denmark - https://lnkd.in/d4gTe-5J. These dedicated advocates represent thousands of people and families living with two rare diseases characterized by very high unmet patient needs. Heads-up: If you work in BD, NPP or R&D within pharma, don't miss out on this, and do let us know if you'd like to connect afterwards to discuss further! Stay tuned for the session here NGOtiate exactly 24hs from now!

Our Allies in Action! ? We love?to share stories of our community members who are out there doing small and large things to help spread awareness and improve care for everyone who lives with Gorlin syndrome. In June, Anne Elise Nowlin, PharmD, BCPS was invited to bring her son to the Real Patient Experience Day at Dell Medical School at the University of Texas at Austin. Anne Elise and her son arrived at the medical school, where students were given a brief lecture by fourth year resident, Connor Hughes, on what Gorlin syndrome is, and then were given the opportunity to ask Anne Elise questions about the experience of caring for a child with the syndrome. We hear there were great questions all around! Thank you, Anne Elise Nowlin, for volunteering your time to help the next generation of doctors be better at recognizing and understanding Gorlin syndrome, Connor Hughes for leading the lecture, and thank you The University of Texas at Austin Dell Medical School for this opportunity! These educational experiences help us raise awareness, and educate our future medical care providers about the syndrome so they can be our best health care partners. Have you or someone you know done something to advocate or raise awareness about Gorlin syndrome?in your community?? We want to know! https://lnkd.in/eUKf6sef

Thoughts on pediatric dermatology research from our Gorlin Syndrome Alliance team at #pedraconference2024!

Executive Director Meredith Weiss is currently attending the 2024 #nordsummit, representing the GSA!

The Gorlin Syndrome Alliance (GSA) is absolutely electrified to share that we have been chosen to join the Chan Zuckerberg Initiative Rare as One (RAO) Network as 1 of 31 patient-led rare disease organizations to receive five year capacity-building support. As a patient-led organization focused on building our ability to drive patient-centered research, this is truly a dream come true for the GSA. The generous support offered by the RAO project will elevate the GSA’s capacity to identify and drive forward the research that leads to what matters most in the lives of families affected by Gorlin syndrome: Better treatments, and a cure. Join us in celebrating this joyous milestone! Together, we will find better treatments and a cure.

Dr. Susan Taylor and GSA Executive Director Julie Breneiser discuss the importance of Skin Cancer Awareness Month. Thank you, Dr. Taylor! #skincancerawarenessmonth