Session I: 11 am – 12 pm
Where We Are Today in Advancing Education and Research

Welcome & Personal Perspective  on the Role of the GSA 
with Beth Spiegel, Parent and Board Member  
Patient-Led Listening Session on Gorlin Syndrome with the FDA
with Julie Breneiser, Patient and Executive Director
Gorlin Syndrome Global Survey & Leveraging the Data
with Meredith Weiss, Parent and Board President
Gorlin Syndrome Alliance Patient Registry (GSAPR)
with Jean Pickford,  Assoc. Director and Registry Co-Investigator

Session II: 12:30 – 2:45 pm
Management of Gorlin Syndrome for Children and Adults

Understanding the Classifications of Basal Cell Carcinoma
with Jean Tang, MD, Professor of Dermatology, Stanford University,
Co-founder & Advisor to PellePharm
Current & Emerging Topical and Surgical Therapies
for Basal Cell Carcinomas
with Elena Hawryluk, MD – Assistant Professor of
Dermatology at Harvard Medical School
Treating and Avoiding Recurrence of Keratocystic Odontogenic Tumors (KCOTS) with James Swift, DDS – Professor, Division of Oral and Maxillofacial Surgery, University of Minnesota
The Genetics of Gorlin Syndrome with Nicola Cadenas, MS, LCGC
Genetic Counselor, University of California San Francisco

Session III: 3:30 – 5:15 pm
Acceptance & Tools for Living With Gorlin Syndrome For All Ages

Managing Stress & Anxiety in Children and Adults
with Jessica Marshall, PsyD, Illinois Licensed Clinical Psychologist
Sunscreen vs. Sunblock & Skin Care with Kelly Colavita,
Skincare Therapist & Esthetician
Sunscreen vs. Sunblock & Skin Care with Kelly Colavita,
Skincare Therapist & Esthetician
Looking Foward to What the Future Holds
with Julie Breneiser,  Patient, Parent and Executive Director

Join us at our National Conference

It’s more than a conference: it’s a community

Every other year, people with Gorlin syndrome and their families gather from across the U.S. to learn about living with the disease.

The Gorlin Syndrome Alliance National Conference is a weekend of learning, connecting and having fun. Conference topics include the latest information on:

  • Surgical and non-surgical treatments
  • Managing BCCs
  • Genetics
  • Eating right for Gorlin syndrome
  • Gorlin syndrome research
  • Helping a child with Gorlin syndrome
  • And more!

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2019 National Conference

The 2019 National Conference was a huge success!! With over 105 people registered, the hotel was filled with patients, caregivers, faculty, pharma execs, and staff. Nearly 60% of the those affected with Gorlin syndrome never attended a national conference before! You could really feel how the GSA touched the lives of our members in significant ways. Members were moved when hearing about the different paths patients took to arrive at their diagnosis. Attendees were inspired to meet each other and understood the courage it took to attend the meeting and make themselves vulnerable. Each story was unique to each person, but the unifying bond was the same for everyone – support, education and finding a cure.

Friday’s educational lectures were loaded with useful information about the importance of the Gorlin Syndrome Registry, protocol for care, building your care team, basal cell carcinomas, and jaw cysts. Click here to view the educational programming that was live-streamed during Friday’s lectures. After a full day of sessions, many of the attendees hopped on a trolley and spent the evening on a tour of historic Philadelphia and a run up the iconic “Rocky” steps at the Philadelphia Art Museum.

Saturday’s sessions began with updates on current and upcoming clinical trials, followed by the latest in research, and then a personal story of resilience from an affected member.  The afternoon sessions featured multiple informative sessions addressing many of the issues our members are dealing with on a regular basis -radiation exposure, diet, insurance, other syndrome symptoms, and genetics.

Sunday’s programming engaged our members in an open-forum discussion about how the GSA can better serve our members and be a more impactful organization. There were a ton of great ideas shared during this discussion, and a few members graciously stepped up to volunteer in some leadership positions, for which the board and staff were so grateful. Attendees were assured that all these great ideas will be considered and/or included in the future. Everyone left with a positive feeling that we may be small, but we are MIGHTY together.

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Below are the educational conference presentations that GSA has been granted permission by the speaker to share with our members.

Livestream of June 14, 2019 Lectures

Why is the Gorlin Syndrome Registry so Important – Joyce Teng, MD, PhD

Gorlin Syndrome: What it Means to You & Your Family, Current Protocol for Care & Creating Your Care Team – Jean Tang, MD, PhD

Facts about BCCs in Children & Adults, Surgical & Non-Surgical Treatments – Elizabeth Billingsley, MD

Patidegib Gel Clinical Trial for BCC Prevention – Jean Tang MD, PhD

Other Gorlin Syndrome Symptoms – Jean Tang, MD, PhD

Understanding Radiation & Self-Advocacy – Julie Breneiser

Tips for Navigating the Insurance Jungle – Sam Breneiser

Presentations To Come

Keratocystic Odontogenic Tumors (KCOTs) Diagnosis, Treatment, Surgery and Lifelong Concerns & Follow-Up – Nolan Jenkins, DDS

Introduction to SUBA™-Itraconazole – Rhonda Schreiber

What are People Saying About Gorlin Syndrome? An Analysis of 150,000 Publicly Available Social Media Posts – James Solomon, MD, PhD

Gorlin Syndrome Genetics-Accepted Theory & Variations – James Solomon, MD, PhD

Nothing About You Without You – Ca