International Pachyonychia Congenita Consortium
A collaborative group of professionals dedicated to patients who hurt every day of their lives
The IPCC consists of the best and brightest professionals in our disease space for the express purpose of advancing research and drug development for PC
From the very first day PC Project existed, we set out to find treatments and a cure for this painful rare disease. For a patient, the symptoms of PC mean a different challenge every day, from being bullied to crawling at home. Since 2004, PC Project has worked with a group of dedicated medical, scientific, and industry professionals who make up the International Pachyonychia Congenita Consortium (IPCC). Today, the global consortium consists of over 400 members focused on a collaborative effort for research, patient care, and genetic and drug discoveries.
LEADERS IN PC RESEARCH AND KNOWLEDGE
Sponsored by PC Project, the IPCC consists of experts in our disease space who work together to determine the best patient care, and advance PC research. As a result of the IPCC (and with access to data from the International PC Research Registry), numerous articles have been published and many studies have been conducted. Read more about the IPCC’s historic journey.
We invite you to participate in this unique community with others who have pledged to work together to make a difference for patients who live with this debilitating, painful disease. Furthermore, the expectation is that treatments for PC will have crossover applications to help patients with similar rare skin diseases who also turn to us for help.
Please contact us at info@pachyonychia.org if you are interested in joining the IPCC or if you have research to share at an upcoming IPCC Symposium or in the IPCC newsletter.
IPCC Annual Symposium
Each year the IPCC holds an annual symposium where scientists, physicians, and drug developers gather to present and collaborate regarding PC-related research and to set new objectives for both the IPCC and for PC Project in order to advance our mission.
This special meeting is normally held prior to the Society of Investigative Dermatology’s annual meeting. To view past symposiums and programs click here.
IPCC WORKING COMMITTEES
Steering Committee
Responsibilities: Decision-making body for “all things PC”; Budget oversight, Partnership with Board of Trustees.
Eli Sprecher, MD, PhD
Pierre Coulombe, PhD
David Hansen, MD
Robyn Hickerson, PhD
Alain Hovnanian, MD, PhD
Amy Paller, MD
Edel O’Toole, MD, PhD
Janice Schwartz
Genetics Committee
Responsibilities: Monthly meetings reviewing patient submissions, genetic testing, counseling.
David Hansen, MD
Antoni Gostynski, MD
Eli Sprecher, MD, PhD
Alain Hovnanian, MD, PhD
Edel O’Toole, MD, PhD
Amy Paller, MD
Research Committee
Responsibilities: Review requests for funding; Define priorities; Oversee data sharing; Set up PC Project grant giving protocols; Look for sources for outside research funding both in and outside of US; Oversee final completion of Research Agenda.
Pierre Coulombe, PhD
Robyn Hickerson, PhD
Alain Hovnanian, MD, PhD
David Kelsell, PhD
Communications Committee
Responsibilities: Chart and implement a strategy for PC website, newsletters (advice on how often, content, etc.), PC social media platforms (Twitter, Instagram, LinkedIn, and Facebook)
Robyn Hickerson, PhD
Peter Steijlen, MD
Michael Conneely, PhD
Membership Committee
Responsibilities: Recruit patients, physicians, scientists, philanthropists to PC Project
Edel O’Toole, MD, PhD
Roger Kaspar, PhD
Pierre Coulombe, PhD
All committee members are part of PC Project’s Medical and Scientific Advisory Board.
We are grateful for the experts working closely with us. Without the support and direction of the IPCC members, we would not be nearly as successful as we are!
Research Articles
Free access to over 700 full-text articles on Pachyonychia Congenita, related disorders, and research.
Videos & Presentations
Over the years PC Project has produced a number of videos & presentations. We hope these will help PCers know they are not alone—there is a PC community.
