PC Awareness – June 2023
Every June, those of us living with Pachyonychia Congenita (PC) – plus our families and friends who love us – come together around a chosen theme to raise awareness about this debilitating disease. This year, our theme for PC Awareness Month is “What I Wish You Knew About PC.” We are so excited about this…
PC News Brief Mar-Apr 2023
PC News Brief Vol 18, No. 2 Mar-Apr 2023 In this newsletter, you will read just a fraction of the activities happening in our strong, global community. During the past months, more than ever, we have seen evidence of what can be accomplished when people, with their unique talents and abilities, work together. Every person’s…
2023 IPCC Symposium at ISID
With excellent presentations, a room packed with researchers, and many more standing in the back, our annual meeting of scientific collaboration to advance research and drug development for those who suffer from PC exceeded our expectations! Date: May 10th, 2023Time: 8:00 am to 1:00 pm, Tokyo, JapanLocation: Takao Room (42nd Floor) at the Keio Plaza…
Pachyonychia Congenita Research Grant Guidelines
Download PDF Version of Grant Guidelines MISSIONPC Project is dedicated to finding effective treatments and a cure for Pachyonychia Congenita (PC), a painful, debilitating skin disorder, through helping and connecting patients, empowering research, and partnering with industry. VISION A day when PC sufferers will live without excruciating pain, isolation, and embarrassment. INTRODUCTION AND OVERVIEWPatients with…
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PCers Needed to Answer 4 Questions
2023 Voice of the Patient Update We’ve detected that Javascript is not enabled. It is required for an optimal survey taking experience. Please check your browser’s settings and make sure Javascript is turned on. Learn how to enable Javascript. Skip survey header 2023 Voice of the Patient Update The EL-PFDD meeting with FDA in 2018…
Camp Discovery
Every summer, the American Academy of Dermatology (AAD) sponsors five (5) one-week sessions of Camp Discovery — a camp designed specifically to meet the medical needs of kids living with chronic skin conditions such as eczema, psoriasis, vitiligo, alopecia, epidermolysis bullosa, ichthyosis, or any other dermatologic condition that creates an impact on a child’s ability…
CSD on the Hill 2023
PC Project joined with other skin disease organizations – all members of the Coalition of Skin Diseases (CSD) to advocate for patients. Learn more about the CSD and Advocacy Program. There were three main asks: Advance Medical Research (National Instituted of Health (NIH) Funding) More research activities are needed to continue emerging opportunities to advance…
Coalition of Skin Diseases Meeting
Gathering to learn from and help other patient advocacy groups PC Project attended the Coalition of Skin Diseases Development Day meeting in conjunction with the American Academy of Dermatology Annual Meeting in New Orleans on May 18, 2023. PC Project met with other leaders of patient advocacy organizations for various skin diseases. Our leader, Janice…
Living with PC for Children
PC varies in how and when it starts impacting the lives for children. It can depend on age, mutation, and the child. How will PC affect me as I grow? Does PC get worse with age? When do all the symptoms and pain kick in? These questions are hard to answer as it is different…
UK Study to Evaluate the Safety & Effectiveness of KM001, a potential treatment for PC
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 development and formulated…
Press Release on the Development of QTORIN Rapamycin for Pachyonychia Congenita
Palvella Therapeutics Announces Pipeline Update on QTORINTM 3.9% Rapamycin Anhydrous Gel (QTORINTM Rapamycin) for Serious, Rare Genetic Skin Diseases with No FDA-approved Therapies – Pivotal Phase 3 data for the treatment of Pachyonychia Congenita anticipated mid-2023 – – Phase 2 data for the treatment of Microcystic Lymphatic Malformations anticipated March 2023 – – Phase 2b…
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4L Trophy Driving for PC Awareness
Maéva et Élisa sont amies et toutes les 2 élèves vétérinaires de Toulouse. Passionnées d’aventure, elles décident de participer au 4L Trophy. Pour cela, elles ont besoin d’être sponsorisées pour les divers frais ainsi que pour l’inscription et la préparation de la voiture. Tout naturellement Maéva, dont la maman est atteinte de la PC, a…
