Want to know if you're in the right place?
Lichen Sclerosus Support Network is your place on the internet to find
Peace of Mind, Confidence, and Support.
Peace of Mind
A central source of science-based and practical information.
Straight-forward education on how to care for yourself.
Community of people who understand what you're going through.
Lichen Sclerosus Support Network is built with you in mind. Because we are you.
When we think about what or who Lichen Sclerosus Support Network is, we have to think about its co-founders and the first set of volunteers who would go on to become the first board. Not about their individual stories but their collective struggle. If you're interested in learning more about the individual members of the board, we encourage you to check our Board Page.
Their collective struggle, which was similar to millions before them and would be to millions after them if they didn't come together to solve this problem, was a lack of quality information.
They were lost looking for information, so they came together to bring much-needed awareness and education to the public about Lichen Sclerosus. This serious chronic progressive skin condition affects as many as 1 in 70 vulva owners.
While LS is treatable and manageable, too many people are suffering in silence because of a lack of information.
They created Lichen Sclerosus Support Network to do something about that.
About LSSN's Mission
We are a not-for-profit organization whose mission is to empower people with Lichen Sclerosus by providing evidence-based education and support.
Every person affected by Lichen Sclerosus deserves accurate and thorough information. This allows them to make sound decisions about their health.
We also believe every provider who treats a patient with or possibly with Lichen Sclerosus should be well-informed on diagnosing, treating, and caring for that person.
That is why Lichen Sclerosus Support Network's mission is to provide accurate and evidence-based education to patients and providers.
About LSSN's Vision
Our vision is a world where those affected by Lichen Sclerosus are informed, educated, and get diagnosed early.
LSSN will empower vulva owners to take an active role in their vulvar health. Programs such as the “Check Your Vulva” program will create an appreciation and knowledge of the vulva. These programs will allow people to advocate for themselves better, leading to earlier diagnoses.
On the other hand, the more Lichen Sclerosus specific education we can provide medical providers, the earlier they can diagnose people. Hence, our second program is the provider education program.
By targeting the problem from both sides, we will reduce the current wait time of 5-15 years for an LS diagnosis.
About LSSN's Programs
Holistic Healing Summit
Bi-Weekly LS Virtual Meetups
Educational blog and videos
Provider Education Program – Coming 2028
Lichen Sclerosus falls between two medical fields, gynecology, and dermatology. Unfortunately, because both lack strong LS education, many patients go mis- or undiagnosed for many years. Patients' conditions worsen and, in rare cases, progress to vulvar cancer due to a lack of a quick diagnosis.
We are determined to change this. Our provider education program will provide education credits to medical providers in multiple fields. They will learn how to diagnose, treat, and provide counseling and aftercare to patients with Lichen Sclerosus.
This education will lead to earlier diagnosis as well as a decrease in vulvar cancer and mental health side effects. Overall providing the community with happier people and families, less time is taken off work, and less medical cost.
We Need Your Support
We have ambitious goals, but we won't be able to accomplish anything without your help.
You can help by making a monetary donation, volunteering your time, or providing your services or products in kind.
Will you help us?