2023 IPCC Symposium at ISID
Please join us for our annual meeting of scientific collaboration to advance research and drug development for those who suffer from PC and other rare and painful PPKs. Date: May 10th, 2023 Time: 9:00 am to 3:00 pm, Tokyo, Japan Location: Takao Room (42nd Floor) at the Keio Plaza Hotel Tokyo, Japan To be held in person in conjunction with…
Special PPK Session at AAD Featuring PC Dermatologists
At the 2023 American Academy of Dermatology (AAD) Association Annual Meeting, PC and other painful conditions with PPK will be featured in a special focus session “U052 Palmoplantar keratoderma (PPK): step by step” We hope all our dermatologist friends will attend and invite their colleagues as well on March 18th. You are also invited to attend a Pachyonychia Congenita Patient…
2023 New Orleans Patient Support Meeting
March 15-17, 2023 Hilton Garden Inn New Orleans Convention Center1001 S. Peters Street, New Orleans, LA 70130, USA SCHEDULE Wednesday, March 15th – Check in starts at 5pm and Welcome Dinner at 6:00 pmThursday, March 16th – All day presentations, discussions and mealsFriday, March 17th – Half day meeting with presentations, discussions, ending around noon, followed by a lunch APPLY…
Stronger Together #GivingTuesday 2022
Please join us for our #GivingTuesday campaign to spread awareness about PC and let others know how important this cause is to you! Because PC is ultra-rare, we are #StrongerTogether! And since PC Project unites patients, friends, family members, physicians, researchers, and pharmaceutical partners in a global effort to find treatments and a cure, we all need to work as…
The Power of Genetic Testing!
One of the greatest services PC Project provides for patients is a correct diagnosis. This is empowering and life-changing for patients to have a name for their condition. Thanks to Dr. Neil Rajan and Genomics England for highlighting the need for diagnostic genetic testing in the article: We need to talk about zebras And extra special thanks to PC advocate,…
2022 Virtual PC Patient Support Meeting
STRONGER TOGETHER Date: Saturday, November 19, 2022Time: 8am-12pm MT(10am-2pm ET, 3pm-7pm UK, 4pm-8pm France, 5pm-9pm Israel) The PC community came together for a few hours of presentations, discussions, and a medical and scientific panel to answer questions. The meeting was free and held virtually in a Zoom meeting format with over 87 attendees. The theme this year is “Stronger Together.”…
ESDR Meeting Amsterdam
PC Project was invited to be in a patient village and participate with the ESDR (European Society of Dermatology Research) Conference, September 28-30, 2022. Thanks to the graciousness of the ESDR leadership for the opportunity to learn, to educate others about PC, and network with additional doctors and scientist about joining the the PC fight! We especially enjoyed attending sessions…
PC Leadership Planning Meeting
Key members of PC Project Medical and Scientific Advisory Board met in Amsterdam on September 28, 2022 for a robust 6 hour strategic planning meeting, organized under the leadership of Eli Sprecher and Pierre Coulombe. The way PC Project will operate and approach PC research going forward has totally been restructured, and for the better! We are so grateful for…
Amsterdam Mini PC Gathering
Because PC Project representatives were in Amsterdam for the European Society for Dermatological Research (ESDR) Annual Meeting, they couldn’t resist the opportunity to hold a small PC Patient Meeting with local Dutch PC patients. (And some patients traveled from other countries to join, too!) On Tuesday, September 27, 2022 from 12:30pm to 4:30pm at at the Beurs Van Berlage Conference…
PC Fundraiser: Quinoa Harvest and Andean Festival
What do a Quinoa Harvest and Andean Festival and PC Project have in common? They’re both all about improving the health and lives of others! One of our favorite PC researchers, Dr. Roger Kaspar, planned and hosted the event on a fun Saturday full of Peruvian music and food, education, and hiking (not for PCers, though) in Panguitch, Utah on…
