Growing Global Partnerships: GSA Joins Maastricht UMC+ Patient Day in the Netherlands

The Gorlin Syndrome Alliance (GSA) was honored to participate in the Maastricht University Medical Center+ (MUMC+) BCNS Patient Evening on June 22, joining patients, clinicians, and researchers from across the Netherlands for an evening dedicated to advancing care and research for people living with Gorlin syndrome.

MUMC+ is recognized as a national center of expertise for individuals with Gorlin syndrome in the Netherlands, bringing together specialists who provide multidisciplinary care while leading research to improve patient outcomes. We are grateful to Drs. Alexandra Patsea and the entire MUMC+ dermatology team for inviting GSA to contribute to this important event.

The program highlighted the latest developments in Gorlin syndrome research and clinical care. Presentations included:

• Welcome and the role of MUMC+ in the care of patients with Gorlin syndrome.
• What's new in dermatology for BCNS, presented by Prof. Dr. Mosterd, highlighting advances in the management of basal cell carcinomas.
• Results from previous research and ongoing/new studies, presented by Drs. Moermans and Patsea.
• The Gorlin Syndrome Alliance: Expanding Global Patient Partnership, presented by Meredith Weiss, highlighting GSA's efforts to expand the international Gorlin Syndrome Natural History Study and engage patients worldwide in advancing research and therapeutic development.
• Symptoms of BCNS beyond the skin, presented by Dr. Verkouteren.
• Quality of life and mental health in BCNS, presented by Drs. Moermans and Patsea.
• An interactive question-and-answer session with patients and presenters.

During GSA's presentation, we shared how the Gorlin Syndrome Natural History Study is expanding internationally to better capture the lived experiences of people with Gorlin syndrome around the world. We also announced that the study is being translated into Dutch, making participation more accessible for patients in the Netherlands. The study is fully GDPR compliant, allowing participants to decide what information they choose to share while contributing valuable data to advance research.

Every patient who participates helps move Gorlin syndrome research forward. By sharing their experiences, participants contribute to discoveries that can improve disease understanding, accelerate therapeutic development, and ultimately lead to better care and more treatment options for the entire Gorlin syndrome community.

Events like this demonstrate the growing importance of international collaboration. Progress in rare disease research depends on strong partnerships among patients, clinicians, researchers, advocacy organizations, and industry. By working together across borders, we can accelerate scientific discovery, improve therapeutic options, and ensure that research reflects the experiences of the global Gorlin syndrome community.

We are deeply grateful to the MUMC+ team for welcoming GSA and providing the opportunity to connect with Dutch patients and families. Their invitation reflects the growing recognition that patient organizations play a vital role in shaping research and advancing science. We look forward to continuing this collaboration and welcoming even more members of the Dutch Gorlin community into our global network as we work together toward better treatments and, ultimately, a cure.