PC Project Newsletter Sept. 2026
Sept. 2026 | Vol 21, No. 6 In This Issue: Mission Progress: A Message from the CEO, Updated Mission Statement Research & Studies: ESDR, PC Project Grants, Clinical Trials Update Community & Events: Connection Circle for Parents, London Patient Support Meeting Recap, New to PC Project Orientation With Appreciation: Because You Stepped Up Last week,…
PC Project Newsletter August 2026
Aug 2026 | Vol 21, No. 5 In This Issue: Community & Events: Connection Circles, Back to School, Town Hall Recap, London Patient Support Meeting Research & Studies: PC Project Grants, ESDR, Publication Highlights Get Involved: Peer-to-Peer Campaign, Make-a-Will Month With Appreciation: Thank You, Jim! Introducing PC Project Connection Circles PC Project is excited to…
TAT-pEDD (palmoplantar Epidermal Differentiation Disorder)
Also known as tyrosinaemia type II (Richner-Hanhart syndrome) TAT-pEDD is a rare genetic skin condition that causes erosive keratoderma on the soles and, unusually, follows the finger dermatoglyphics (epidermal ridges that constitute fingerprints) with light-sensitivity associated with ulcerations of the cornea1. Patients may also have neurological manifestations, most commonly intellectual disability. The condition is caused by a deficiency in a liver enzyme called tyrosine aminotransferase, which can cause an accumulation of tyrosine and…
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New to PC Project?
Join PC Project CEO Janice Schwartz on Zoom for an orientation where you’ll learn about the resources, programs, and support available to you through PC Project. It’s also an opportunity to ask questions, meet with somebody who understands the PC/pEDD journey, and discover how to stay connected with our community. We will have two separate…
Connection Circle: Parents
Join us Saturday, September 19th for parents helping parents. Raising a child with PC and other pEDDs comes with unique challenges, and no one understands that journey better than the parents. PC Project’s first Connection Circle, especially for parents, will be held on Saturday, September 19, at 9am MT / 11am ET / 4pm BST. This is an hour…
PC Project Connection Circles
Introducing PC Project’s New Way to Unite and Serve our Community PC Project is excited to announce our newest community program, Connection Circles. Connection Circles are peer-led, open discussion sessions where patients come together in a warm, supportive environment to connect with others who truly understand the journey of living with PC and related pEDDs.…
SLURP1-pEDD
Also known as Mal de Meleda SLURP1-pEDD is a rare genetic skin condition that causes palmoplantar keratoderma (PPK) and, in some patients, progressive symmetric erythrokeratoderma (PSEK). Affected skin can appear whitish and diffusely thickened on the palms and soles, sometimes extending to openings on the body such as the mouth. Nail dystrophy and spreading keratoderma are also common.…
PERP-pEDD (palmoplantar Epidermal Differentiation Disorder)
Also known as Olmsted syndrome ATTENTION PC Project is partnering with ORVIDA Pharma to reach out to individuals and families affected by TRPV3 or PERP-gene variants (which cause types of Olmsted Syndrome) regarding a clinical trial for people with this specific skin condition. Click the link below to learn more. https://www.pachyonychia.org/clinical-trial-olmsted-trpv3-perp/ PERP-pEDD is a rare genetic skin…
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Thank You, Jim!
Thank You, Jim: A True PC Warrior After years of dedicated service, longtime Board member Jim Rittle is stepping down from the PC Project Board of Directors. While we’ll certainly miss his perspective around the Board table, we’re even more grateful for the countless ways he has inspired our community. Like many volunteers, Jim’s journey to Board service was shaped by both…
Step Up For PC: Peer-to-Peer Campaign
Imagine if every step hurt For most people, taking a walk is something they never think twice about. For someone living with Pachyonychia Congenita (PC) or another painful palmoplantar Epidermal Differentiation Disorder (pEDD), every step can be painful. Walking, standing, working, going to school, or simply getting through the day often comes with a cost.…
PC Newsletter July 2026
July 2026 | Vol 21, No. 4 In This Issue: Mission Progress: Expanding Our Reach, New PC Project Staff Patient Voices: Still Fighting, Generations of Strength Research & Studies: BAD Conference, World Congress on Rare Diseases, Clinical Trials Update, A Pioneer in Vietnam Community & Events: Town Hall Zoom Meeting, London Patient Support Meeting, PC…
Still Fighting: Jane’s Story
Jane Santos lives in Fort Worth, Texas and has spent her entire life navigating the realities of pachyonychia congenita — as a patient, a mother of children with PC, and now a grandmother to the next generation. Her story is one of endurance, love for family, and a fierce determination to keep moving forward despite constant…
