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.
As the Gorlin Syndrome Alliance continues to grow and evolve, so does the administrative team behind the exciting advances in the organization. Julie Breneiser has shifted from her role as volunteer President of the GSA Board of Directors to the newly appointed Executive Director. Not only do Julie’s executive-level skills and established knowledge make her […]
Courtesy of Camilla Krogh Lauritzen, Chief Patient Officer, Rare Diseases, LEO Pharma At LEO Pharma, we know that people living with e.g. rare diseases are experts in their own right: They are indeed disease experience experts. We also appreciate the relevance for us to listen and learn from this expert group, and that an increasing […]