2021 Virtual PC Patient Support Meeting

October 14th, 2021 / Pachyonychia

Date: Saturday, November 20, 2021Time: 8am-12pm MT (10am-2pm ET; 3pm-7pm UK time) We met with the PC community for a few hours of presentations, discussions, and a medical and scientific panel to answer your questions! The meeting was free and held virtually in a Zoom meeting format. Our theme this year is “Joy in the Journey” because we truly believe…

#PCunselfie #SupportPCProject #GivingTuesday

October 12th, 2021 / Pachyonychia


VAPAUS Phase 3 Clinical Trial for PC

October 8th, 2021 / Pachyonychia

We’re pleased to announce recruitment has begun for the Palvella Phase 3 Clinical Trial for PC patients who live in the continental US and the UK. Please carefully read the information below and if you qualify and are interested in having a study site contact you with more details, fill out this form: registry.pachyonychia.org/s3/VAPAUS Seeking Participants for Pachyonychia Congenita Clinical…

2021 IPCC Symposium June 28-29 VIRTUAL

March 19th, 2021 / Pachyonychia

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

November 10th, 2020 / Pachyonychia

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

November 7th, 2020 / Pachyonychia

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

November 1st, 2020 / Pachyonychia

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…

Externally-led Patient-Focused Drug Development Meeting with FDA for Pachyonychia Congenita

October 27th, 2020 / Pachyonychia

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…

VALO-2 – Extension Study Recruitment

October 14th, 2020 / Pachyonychia

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

June 1st, 2020 / Pachyonychia

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…

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