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Clinical Trials

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 … [Read more...] about Clinical Trial Opportunity for Olmsted (TRPV3/PERP variants)

Orvida Clinical Trial for OS Has Launched: PC Trial is Next

May 14, 2026

The Orvida clinical trial for Olmsted Syndrome (TRPV3-pEDD and PERP-pEDD) has begun and is currently underway in the UK, France, and the US. We extend a big shout-out to our OS registry patients who are making significant sacrifices to be among the first participants in this study evaluating a new … [Read more...] about Orvida Clinical Trial for OS Has Launched: PC Trial is Next

Pilot Study for PC and TRPV3 Patients

June 22, 2025

UK Patients in the International PC Research Registry helped to develop endpoints for clinical trials UK registry patients gathered in London on June 20-22, 2025, to help develop assessments for a clinical trial sponsored by Kamari Pharma who is developing a drug for PC and TRPV3. One of the … [Read more...] about Pilot Study for PC and TRPV3 Patients

PC Research Agenda

December 20, 2023

One of PC Project’s high-priority strategic goals was developing and disseminating a PC Research Agenda (RA). The RA was a major project that took hours of dedication and input from key thought leaders in our field. Dr. Helaine Resnick, a friend of board members from the Klein/Feinstein family, … [Read more...] about PC Research Agenda

Sol-Gel Phase 1 Update

August 23, 2023

Erlotinib ointment 3.5% and 5% were investigated by Sol-Gel on healthy volunteers in maximal use condition. Following 28 days of daily application all 12 subjects have completed the study. In general both Erlotinib ointment 3.5% and 5% are considered to be well tolerated , no systemic … [Read more...] about Sol-Gel Phase 1 Update

An Open Letter to Palvella

July 24, 2023

A Message of Gratitude and Hope from Jack Padovano, PC Project Board Chair Dear Wes and the entire Palvella Team, In the world of medical research, hope and determination often come hand in hand with challenges and setbacks. It is within these moments that the true impact of support and … [Read more...] about An Open Letter to Palvella

Update on Rapamycin Clinical Trial

July 21, 2023

On July 20th, 2023, our industry partner, Palvella Therapeutics, shared topline results from the Phase 3 study of QTORIN™ 3.9% rapamycin anhydrous gel (QTORIN™ rapamycin) for the treatment of PC through a press release. The main points of the press release including the … [Read more...] about Update on Rapamycin Clinical Trial

UK Study to Evaluate the Safety & Effectiveness of KM001, a potential treatment for PC

February 21, 2023

Kamari Pharma is happy to announce the initiation of a new study in the UK to evaluate the safety and efficacy of KM001-a new potential treatment for PC and PPPK1 patients. KM001 is a novel, small molecule which acts as TRPV3 inhibitor- a protein that plays essential role in keratoderma and itch … [Read more...] about UK Study to Evaluate the Safety & Effectiveness of KM001, a potential treatment for PC

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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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