2021 IPCC Symposium June 28-29 VIRTUAL
All researchers, clinicians, and industry representatives interested in PC (and other rare skin conditions with PPK) are warmly invited by Professors Edel O’Toole and Eli Sprecher to join us for another special meeting of collaboration at: The 17th Annual International Pachyonychia Congenita Consortium (IPCC) Symposium Monday and Tuesday, June 28-29, 2021 8am-11am MDT Each Day(10am-1pm EDT, 3pm-6pm UK, 4pm-7pm France,…
PC Teen Web Meeting Nov 21
All PC teenagers invited to join a virtual meeting to discuss issues, challenges, and positive aspects of life with PC. There are no age restrictions but the content will be directed at older children/teenagers with PC. Parents, we do not have emails for your children/teenagers so you will either need to share the link with your teens or register your…
PC Town Hall Meeting
Second PC Town Hall The second PC town hall meeting was held Friday, November 20, 2020 at 11:00am MT. The meeting had an update on PC Project’s activities during the pandemic, messages from select PC Project’s Board of Trustee members, and #Worst2First4PC discussion. Below is a recording of the meeting. First PC Town Hall The first PC town hall meeting…
PC Giving Tuesday #Worst2First4PC
Celebrated on the Tuesday following the US Thanksgiving and entering its ninth year, #GivingTuesday is a global day of charitable giving fueled by the power of social media. For the past few years, PC Project has participated in Giving Tuesday and have successfully raised money to help fund our mission of finding a cure for PC. Pachyonychia Congenita (PC) is…
VALO-2 – Extension Study Recruitment
If you were a VALO study participant, are you interested in participating in the extension study? If you participated in the VALO clinical research study, and used study medication for at least 12 weeks, then you may be eligible to participate in the VALO-2 extension trial. If you are interested in participating in VALO-2, you may be eligible to receive:…
June 2020 – PC Awareness Month
How will you join the PC community in sharing information about PC with family, friends and others for June PC Awareness Month? Submitted Art Work Kaelyn, Elk Grove, Illinois USA – Not all heros wear capes Jack, PC Project Board Chair, California USA – Jack has been a long time donor, supporter and advocate for PC Project. He is always…
Pachyonychia Congenita Town Hall May 19, 2020
The first-ever PC Project town hall meeting was held on Thursday, March 19. PC Project shared the basic fundamentals of PC, what living with PC means, and where we are with the Valo trial and other potential studies in the future. Click below to watch the recording of the meeting. Also, please click here to complete an evaluation of the…
2020 France PC Patient Support Meeting Postponed
This announcement will come as no surprise, but due to the COVID-19 pandemic, PC Project is postponing the 2020 France PC Patient Support Meeting. We have talked with our physicians, scientists and representatives from Le Coeur Au Pied, our French PC advocacy group, and agree this is the best decision under the circumstances. In addition to travel restrictions and the…
2020 IPCC Symposium May 12-13
CANCELLED: International Pachyonychia Congenita Consortium (IPCC) Symposium: Due to the COVID-19 pandemic, PC Project has cancelled the International PC Consortium Symposium for May 12-13, 2020. We typically hold our meeting prior to the Society of Investigative Dermatology (SID) Annual Conference which has also officially been cancelled. With our researchers and clinicians located in all corners of the world, travel for…
Externally-led Patient-Focused Drug Development Meeting with FDA for Pachyonychia Congenita
Click here to read the Voice of the Patient: Report from the Pachyonychia Congenita Project Externally-led Patient-Focused Drug Development (EL-PFDD) Meeting. Pachyonychia Congenita Project co-organized an Externally-led Patient-Focused Drug Development Meeting (EL-PFDD) with debra of America for FDA officials. This FDA meeting took place the morning of April 6, 2018, at the College Park Marriott Hotel in Hyattsville, MD, near…
