2022 Virtual PC Patient Support Meeting
STRONGER TOGETHER Date: Saturday, November 19, 2022Time: 8am-12pm MT (10am-2pm ET; 3pm-7pm UK time) The PC community gathered together 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 PSM theme was “Stronger Together.” With…
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!…
2022 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!…
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…
2022 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…
PC Fundraiser: Quinoa Harvest and Andean Festival 2022
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,…
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2022 Minneapolis PC Patient Gathering
PC Project spent a few days in the land of 10,000 lakes with a group of PC friends. On August 12-13, 2022, PC Project had a small Patient Gathering in Minneapolis, MN. This meeting was sponsored by Palvella to help accelerate enrollment in the Phase 3 Clinical trial. Some patients were there to be screened…
2022 Hybrid IPCC Symposium
The 18th Annual International Pachyonychia Congenita Consortium (IPCC) Symposium Learn More 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,…
2021 Virtual PC Patient Support Meeting
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…
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…
2020 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…
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…
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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…
2019 Boston Patient Support Meeting June 20-22
Boston PC Patient Support MeetingJune 20-22, 2019Hilton Boston Logan Airport Hotel Thursday, June 20th – welcome dinner starts at 6:30 pmFriday, June 21st- all day presentations, discussions and mealsSaturday, June 22nd – half day meeting with the closing luncheon at 12:30 pm REGISTER FOR MEETING – Please register as soon as possible so we can…
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2019 IPCC Annual Meeting May 7-8
International Pachyonychia Congenita Consortium (IPCC) SymposiumMay 7-8, 2019Hilton Chicago Hotel in conjunction with theSociety for Investigative Dermatology (SID) Annual Meeting Click here for a copy of the program. Click here for write up and photos in IPCC Newsletter. Tuesday, May 7 12:00 pm Lunch and welcome12:30-5:30 pm Presentations6:00 pm Meet for dinner activity6:30 pm Board boat…
2018 London England Patient Support Meeting Oct 19-21
2018 London England—PC Patient Support MeetingOctober 19-21, 2018Park Inn by Radisson London Heathrow This meeting is sponsored by Palvella Therapeutics, PC Project and supported by a grant from Novartis Pharmaceuticals UK Limited. Here is a link to a Palvella Press Release about the meeting https://globenewswire.com/news-release/2018/10/19/1624001/0/en/Palvella-Therapeutics-to-Present-Update-on-PTX-022-at-Pachyonychia-Congenita-Project-Patient-Support-Meeting-in-London-UK.html Meeting write up will be published in November 2018 PC News…
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2017 IPCC Symposium Apr 25-26
The IPCC meeting will take place on the afternoon of 25th April and morning of 26th April, at the SID venue in Portland, Oregon and will include a conference dinner at an external venue. View meeting program here. REGISTRATION: Register here. Please do as soon as possible so we can make plans for the catering…
2017 PC Patient Support Meeting Jun 15-17
The 2017 Patient Support Meeting will be held June 15, 16 & 17, 2017 in Salt Lake City, Utah at the R&L Hotel Salt Lake City. Click here for a detailed flyer about the meeting Register for the meeting Reserve your hotel room at the $99/night group rate Pay meeting fee $125/adult and $75/child age 2-12.…
