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Novel NonSteroidal Lichen Sclerosus Study: Your Experience Could Help Others

What is Lichen Sclerosus?

Lichen Sclerosus is a chronic inflammatory autoimmune skin condition that mostly affects the female anogenital skin. It creates localized inflammation, which changes the texture of the skin. The skin can turn white and appear waxy. The most common symptoms are itching, tears, architectural changes, and pain with sex (dyspareunia). Although there is no current cure for Lichen Sclerosus, it can be managed with proper treatment and care.

The Lichen Sclerosus Support Network is a beacon of support and empowerment for individuals and couples navigating the challenges of Lichen Sclerosus. Our international non-profit organization recognizes LS's far-reaching impact on physical and emotional well-being, extending beyond the initial diagnosis.

LSSN goes beyond simply providing information. We foster a supportive community through educational resources, workshops, and online forums. By offering easy-to-understand, evidence-based knowledge and fostering open conversations about living with LS, the network empowers individuals and couples to overcome obstacles and rewrite their love stories, fostering inclusivity and understanding throughout their journey.

Learn more about Lichen Sclerosus
women sitting on a sofa contemplating on what Lichen Sclerosus is

What's Happening at LSSN?

Ready to Build Stronger Relationships? Upgrade for Exclusive Benefits!

The Lichen Sclerosus Support Network Wholistic Healing Summit is the largest patient-centered virtual event. This year we're focusing on your relationships. Whether you are a patient, partners and caregiver each play an important role in the health journey.

Join the Wholistic Healing Summit to:
🪷 Learn from Experts
🪷 Connect with a Supportive Community
🪷Find Practical Tools & Strategies
🪷Empower Yourself and Your Support System

With less then a week away, don't wait to get your ticket to this free event today!

Click for more details and to get your Pass
Check Out Our Annual Report

LSSN is on a mission to empower people with lichen sclerosus and reduce the time to diagnosis.

2023 was an amazing year of growth at Lichen Sclerosus Support Network. We

* Started three new education streams
* Held more live virtual events
* Reached more people then ever before
* Made awesome partnerships
* And so much more!

Check out our 2023 Annual Report to get all the details.

We could not have done it without the support of our amazing community. Thank you!

We're looking to do bigger and better things this year. we hop you're ready to give people all over the world their lives back.

Because we sure are!

Read our 2023 Annual Report
LSSN Has Joined The Autoimmune Registry!

We are proud to announce we are now a part of the Autoimmune Registry Network. Together, we can share data and further research on autoimmune diseases. We're now connected with others autoimmune disease groups looking to advance research for new treatments.

We're excited to see the advancements this collaboration brings!

Check out the Autoimmune registry
LSSN Is A 2023 Top-Rated Nonprofit!

You made it possible!

Thank you to everyone who has shared and continues to share their reviews on GreatNonprofits.org website. By sharing your stories and experiences, LSSN has become one of the first 2023 Top-Rated Nonprofits of the year.

This honor makes it possible for more donors and potential volunteers to find our organization and help further our mission.

If LSSN has touched your life please consider sharing your review so even more people can find us.

Click to share your review
The LSSN Membership is OPEN!

We are pleased to announce the new Lichen Sclerosus Support Network membership!

In partnership with LS Warrior LLC, we will provide our recurring monthly and annual donors various programs to help them overcome the mental and physical effects of Lichen Sclerosus.

Click to learn more about the program
We need your Help

It takes a team of dedicated volunteers to help with research, copywriting, web design, event planning, etc., to bring quality lichen sclerosus education to our LS community.

We can use your help. That's why we're calling for all volunteers.

Click to view our volunteer job board

International Monthly LS Support Virtual Meetups

Support from People who Understand
Who better to share your story with and get answers from then others going through the same thing.
Evidence-based Information not Advice
No one can tell you what to do with your body. We'll tell you what the evidence says. You take what you need and leave the rest. There is no one-size fits all in LS.
Available to Everyone with Vulvar LS
We meet every other Saturday from 2-4 and 7-9 PM EST, to make the meetups accessible to all time zones. We provide an inclusive environment and respect everyone's pronouns and identity.
Not only will you be surrounded by friends, our meeting are held on a password protected secure platform. Your login information will be emailed to you within a week of the next meetup.
Strength in Numbers
There's something freeing and empowering about telling your story to a group who gets it. It will give you the strength and power to continue the fight.
Signup For Our Free Virtual Meetups

How to Donate

Join our Circle of Support
  • Help our organization provide quality content
  • Share your business with our community
  • Support evidence-based Lichen Sclerosus education and support
Donate Time or Services
  • Volunteer your time to advance the mission
  • Donate your service or product
  • Make a one-time donation or become a continuous sponsor

Lichen Sclerosus is more common than we think and it's often missed and this is really important.
Jill Krapf, MD

Get the Facts
Find answers to our most frequently asked questions.
Get Support
Join our virtual support.
Get A Provider
Search our referral based provider directory.

Lichen Sclerosus Blogs and Videos

Graphic design image of a person in a red dress holding their hands over their pelvic area to represent needing to go pee/urinary frequency and a bladder with a grimaced expression and tears coming out of its eyes.
May 19, 2024
Does Vulvar Lichen Sclerosus Affect the Bladder?
We know vulvar lichen sclerosus affects the vulva, but does vulvar lichen sclerosus affect the bladder? Click to learn more.
Graphic design image of a larger person with long black hair sitting in purple underwear representing anti-fat bias and vulvar lichen sclerosus.
May 12, 2024
Anti-Fat Bias, Misdiagnoses, and Vulvar Lichen Sclerosus
Can anti-fat bias contribute to delayed diagnosis for people with vulvar lichen sclerosus? Click here to learn more.
Image of Jaclyn with long brown hair, cat-eye winged eyeliner, red lipstick and a mauve shirt pointing at the title text which reads, "How to treat and manage a vulvar lichen sclerosus flare."
May 9, 2024
How to Treat and Manage a Vulvar Lichen Sclerosus Flare
Do you know how to treat a vulvar lichen sclerosus flare? Or how to manage symptoms during a flare? Click to learn more.
Graphic design image of a person with pale skin, dark blue-grey pants, an orange-red t-shirt sitting on the floor, with their legs hugged tightly into their chest and a pained expression on their face representing LS and trauma.
April 29, 2024
Does Trauma cause Lichen Sclerosus?
Does trauma cause LS? Click to learn more about what the science says, what we see in the community, and ways to process trauma.

Meet the Executive Board

Pam Cobb
Pam Cobb
Chief Executive Officer
Kathy Ruiz-Carter
Kathy Ruiz-Carter
Jaclyn Lanthier
Jaclyn Lanthier

Words from the Community

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