The Gorlin Syndrome Alliance has been working with Palvella Therapeutics since 2017. We look forward to continuing our collaboration to move the clinical trial of PTX-367 (QTORIN™ rapamycin) forward. Having another treatment method to reduce the burden of the basal cell carcinomas that many patients in our community face is vital. PALVELLA THERAPEUTICS COMPLETES $45 MILLION SERIES […]
The Gorlin Syndrome Alliance asked Dr. Jean Tang, Professor of Dermatology at Stanford University, some frequently asked questions about sunscreen. What is the difference between sunscreen and sun block? They are the same. What qualities should we look for in sunscreen / block for children? Broad spectrum sunscreens using physical blockers (zinc oxide or titanium […]
On Tuesday, April 28, Julie Breneiser, the Executive Director of the Gorlin Syndrome Alliance will be a presenter in a NORD webinar with Camilla Krogh Lauritzen, Chief Patient Officer of LEO Pharma. If you are interested in watching, you can register via the link HERE. Insert the “Gorlin Syndrome Alliance” as the Company Name. About […]
Due to the global COVID-19 pandemic, the Gorlin Syndrome Alliance has decided to postpone the One-Day Member Meeting scheduled for June 6, 2020 in Minneapolis, Minnesota. As soon as a new date for this meeting has been determined, an announcement will be made. The GSA looks forward to seeing members in the coming months.
The Gorlin Syndrome Alliance was pleased to have Dr. Jim Swift, a professor in the division of Oral and Maxillofacial Surgery at the University of Minnesota School of Dentistry, participate in a live webinar on Thursday, January 16th, at 8:30 PM EST. Dr. Swift was joined by Julie Breneiser, Executive Director of the Gorlin Syndrome […]
The Gorlin Syndrome Alliance is excited to be hosting the first of our one day regional conferences, on February 8th at the Mayo Clinic in Scottsdale, Arizona. The agenda includes research updates and educational lectures from dermatologists and medical professionals, including Dr. Aleksandar Sekulic. After lunch, GSA members and staff will join with each other […]
TAKE THE 2019 GORLIN SYNDROME PATIENT COMMUNITY SURVEY *Please Note the Survey is Now Closed as of 1/12/2020 The Gorlin Syndrome Alliance, in partnership with the Gorlin Syndrome Group (UK based), is proud to be part of launching the first ever global Gorlin Syndrome patient community survey. If you are living with Gorlin Syndrome or […]
Cole, age 11, was diagnosed with Gorlin syndrome at age 8, but now helps coach football and has his sights set on becoming a sports announcer. Cole had a fantastic opportunity through Make a Wish to meet with Chicago Bears defensive coordinator Chuck Pagano. To learn more about Cole and his experience, click here!
The Gorlin Syndrome Alliance hosted a live-stream video conversation Thursday, November 7th, on our Facebook Page and on our YouTube Channel, focused on children and Gorlin syndrome. Meredith Weiss, GSA president and mother to a 12-year old daughter, and Beth and Dan Spiegel, GSA members and parents to an 11-year old son, spoke with Dr. […]
The GSA is part of a ground-breaking collaboration with Gorlin Syndrome Group (UK), PellePharm and LEO Pharma – We call it a Partnership4Change. Watch this video to learn more.