Lichen Sclerosus Support Network

The Lichen Sclerosus Support Network (LSSN) is a global, patient-led nonprofit organization dedicated to transforming the lives of people affected by lichen sclerosus. For many, the path to a correct diagnosis takes between 5 to 15 years, a journey often filled with confusion, pain, and profound isolation. We exist to bridge this gap in care by offering a safe haven where “finding your people” leads to “reclaiming your life”.

Our core purpose is to empower people with lichen sclerosus to thrive, not just manage their symptoms. We understand the fear and frustration that come with this diagnosis, from the worry of physical changes to the impact on intimate relationships. That is why we provide:

Evidence-Based Education: We translate complex medical information into clear, accessible language through expert-led sessions, workshops, and our comprehensive library of resources.

A Global Support Community: Through virtual meetups and private online spaces, we foster a sense of unity, proving that no one has to walk this path alone.

Provider Advocacy: We actively work to improve the future of LS care by offering a Provider Continuing Education Program, encouraging earlier diagnoses and better treatment outcomes.

At LSSN, we believe a diagnosis is not a life sentence. We are the empathetic, “real-talk” guide for our community, providing the tools, hope, and peace of mind needed to move from despair to empowerment.

Find Your Community. Join Our Community Today. Visit us at lssupportnetwork.org.