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Clinical Trial Opportunity for Olmsted (TRPV3/PERP variants)

June 4, 2026

A clinical trial specifically for patients 18 and older with TRPV3 or PERP gene variants (Olmsted Syndrome) has begun enrolling participants in Europe and North America. If you are an affected individual with TRPV3-pEDD or PERP-pEDD and are interested in learning more, please fill out this simple form:

Clinical Trial Interest Form for TRPV3/PERP

Submitting the form does not obligate you to participate in the study. It simply allows us to provide you with additional information about the trial, eligibility requirements, and next steps.

Clinical research is an important step toward developing better treatments for rare skin disorders, and we are encouraged to see a study specifically focused on individuals with TRPV3- or PERP-related Olmsted Syndrome.

Healthcare Professionals:
If you are a physician or healthcare provider caring for a patient with Olmsted Syndrome, please contact us as soon as possible at info@pachyonychia.org so we can provide information about the study and potential referral opportunities.

We look forward to helping connect interested individuals and families with this important research opportunity.

Questions? Contact us at info@pachyonychia.org

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PACHYONYCHIA CONGENITA PROJECT

P.O. Box 17850
Holladay, UT 84117

info@pachyonychia.org

801-987-8758

EIN 68-0567493

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