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
Watch the following video about World Rare Disease Day:
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
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
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.
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
Please note patient recruitment and screening is now closed at this time. Thank you for your interest in participating in the Phase III Patidegib 2% topical gel clinical trial for the
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:
Transitions, no matter what the age and personal situation can be a challenge. Add Gorlin syndrome to this and there is another hill to climb. In ways, raising children is like