WalesOnline Article: ‘My feet are so callused I have to wear flip-flops and take a scalpel to them every fortnight.’

April 27th, 2022 / Pachyonychia

Below is full text from the article: Smith, Mark (2022, March 2). ‘My feet are so callused I have to wear flip-flops and take a scalpel to them every fortnight.’ WalesOnline. https://www.walesonline.co.uk/news/health/my-feet-callused-wear-flip-23260932 WARNING: This story contains graphic images By Mark Smith Health Correspondent Date: 2 MAR 2022 Dad-of-two Tom Baker is in almost unbearable agony every time he walks. His…

PC Town Hall Meeting

March 7th, 2022 / Pachyonychia

5 April 2022 – PC Town Hall  The third PC Town hall meeting was held Tuesday, April 5, 2022 at 6:00pm MT (8:00pm ET). The meeting included an update from PC Project and an information session on the VAPAUS Clinical Trial for PC with special guests Drs. Kempers and Hansen. Second PC Town Hall  The second PC town hall meeting…

2022 Hybrid IPCC Symposium

February 2nd, 2022 / Pachyonychia

The 18th Annual International Pachyonychia Congenita Consortium (IPCC) Symposium Wednesday, May 18, 2022 8am-12pm PDT (9am-1pm MDT, 10am-2pm CDT, 11am-3pm EDT, 4pm-8pm UK, 5pm-9pm France, 6pm-10pm Israel) To be held in person with the Society for Investigative Dermatology (SID) Annual Meeting at the Oregon Convention Center AND virtually through Zoom. All researchers, clinicians, and industry representatives interested in PC (and…

VAPAUS Phase 3 Clinical Trial for PC

November 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 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

 

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 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…

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