Lichen Planus Patient Experience Survey & Clinical Research | LSSN

100 by December 31st Research Initiative

Live with Lichen Planus? Your experience can shape what happens next.

Navigating LP often means moving in systems that don’t have answers. We’re gathering 100 stories by December 31st to create a published research paper—giving doctors and researchers the real-world evidence they need to improve care.

Check if your experience qualifies

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If you’ve experienced any of this, you belong here:

The Search for Answers

Navigating symptoms that don’t yet have clear explanations or waiting months for a definitive diagnosis.

The Information Gap

Trying to balance conflicting advice while searching for care and resources that fit your specific needs.

The Missing Perspective

Feeling like your real-life experience doesn’t “fit the box” of current research or medical documentation.

You’re not alone. We’re seeing these patterns—and your story helps make them visible.

You know how difficult this journey can be. By adding your voice, you help ensure the next person doesn’t have to navigate it alone.

See why your story matters

December 31 Research Cutoff

You can help reveal what’s missing in LP care.

Many parts of the patient experience are not visible in research or clinical settings. We are collecting 100 patient experiences to create a published research paper and ensure your reality is reflected in clinical research.

Find the Gaps

Identify where patients get stuck in diagnostic loops and care delays that standard medical journals don’t track.

Create Hard Evidence

Contribute your history to a formal research paper that clinicians and pharmacists will use to improve treatment guidelines.

Prove the Real Timeline

Document the actual time it takes to find stability, helping to justify faster access to specialists for future patients.

Represent the 100

Help build a dataset that finally reflects the diversity of the community’s lived experiences across the United States.

Help us reach the 100-voice goal.

This 35-minute survey is designed to produce credible, usable scientific evidence. If we reach our goal by the December deadline, we can move into the publishing phase—turning these experiences into a report that can influence care and research.

37 Voices Collected Goal: 100

Check if you qualify to join the 100 Option to be Anonymous • Secure Data Handling

A Collaborative Mission

A shared mission for better care.

This survey is conducted in partnership with an international pharmaceutical company and three other lichen planus patient organizations to identify real-world barriers to care and research participation. Your insights help turn individual struggles into the collective proof needed to drive real-world change in diagnosis and support.

We know many clinicians are working hard within constrained systems. This effort is designed to identify exactly where lichen planus patients encounter gaps, so that care, information, and research can finally evolve to meet your needs.

Secure & Anonymous • December 31 Deadline

Let’s make sure this study is the right fit.

To ensure our analysis is accurate for the final research paper, we are looking for 100 specific journeys that meet the following criteria:

Adult Participation

You are 18 years of age or older at the time of the survey.

Verified Diagnosis

You have been diagnosed with lichen planus (Skin or Oral).

U.S. Resident

You currently live in the United States.

New Contribution

You haven’t completed a similar survey regarding your experience in the last 4 weeks.

I meet the criteria — let’s start