PC Newsletter July 2026
July 2026 | Vol 21, No. 4 In This Issue: Mission Progress: Expanding Our Reach, New PC Project Staff Patient Voices: Still Fighting, Generations of Strength Research & Studies: BAD Conference, World Congress on Rare Diseases, Clinical Trials Update, A Pioneer in Vietnam Community & Events: Town Hall Zoom Meeting, London Patient Support Meeting, PC…
PC Newsletter May 2026
May 2026 | Vol 21, No. 3 In this Issue: Mission Progress: Advancing Research, Building Connections, Creating Hope Patient Voices: Ela’s Story of Growing Up With PC Research & Studies: Clinical Trial Update, Latest Research News Community & Events: Important London Patient Meeting Deadlines, Key Scientific & Medical Conferences, Patient Panel Get Involved: Firewalk, Advocates…
PC Newsletter Mar 2026
March 2026 | Vol 21, No. 2 In this Issue: Mission Progress: Behind the Scenes Patient Voices: Eunice & Aurora Research & Studies: Footwear Survey, Publications, Patient Registry Community & Events: EDD Symposium, London Patient Meeting Get Involved: Fundraisers, Represent PC Project on the Hill With Gratitude: Remembering Cherished People Because of You: Progress Behind…
PC Newsletter Jan 2026
PC Project Newsletter Vol 21, No. 1Jan 2026 In this Issue: State of the Organization: A Year of Momentum & What’s Ahead Patient Voices: Niam’s Essay & James Poem Research & Studies: Clinical Trial Update, Grants, Publications, PC Registry Community & Events: EDD Scientific Symposium & London Patient Meeting Getting Involved: Need Care Videos &…
PC Newsletter Oct 2025
PC Newsletter Vol 20, No. 5Oct 2025 As we enter this season of thanks, here are just some of the highlights from the past few months that we are grateful for: Moving the Mission Forward: Update From the Executive Director Living with PC: Pain, Stigma, and Hope Landmark PC Research Session at ESDR First International…
PC Newsletter July 2025
PC Newsletter Vol 20, No. 4July 2025 In this newsletter, we invite you to explore the following announcements and activities: PC Project sponsored Research Session at ESDR NIAMS/NCATS Meeting Pilot Study for PC & TRPV3 Now Accepting Grant Applications New Disease Classification by Gene Names PC Research Update – Diana Blaydon, PhD Camp Discovery in…
PC Newsletter May 2025
PC Newsletter Vol 20, No. 3May 2025 The events of this past month have reminded us just how exceptional our PC Project community truly is. We’re still catching our breath from all the exciting activities – and we’re already looking forward to what’s ahead. Here’s this month’s news at a glance: Uplifted and Inspired: 2025…
PC Newsletter Mar-Apr 2025
PC Newsletter Vol 20, No. 2Mar-Apr 2025 In this newsletter, we invite you to explore the following announcements and activities: PC Project’s Two Biggest Meetings of the Year PC Research Update on Gene Editing PC Project at the AAD Join the Board of Trustees Parenting Strategies for Raising PC Children Educating Dermatology Nurses Coalition of…
PC Newsletter Jan-Feb 2025
PC Newsletter Vol 20, No. 1Jan – Feb 2025 Welcome to this edition of the PC Project Newsletter! We have exciting updates, upcoming events, and opportunities for you to get involved. Here’s what’s included: Upcoming Events PC Patient Support Meeting – May 4-6, 2025, in San Diego! Plan to join us. Annual IPCC Symposium – May 7,…
PC Newsletter December 2024
PC Newsletter Vol 19, No. 6Dec 2024 As we head into the holiday season, we tend to think about what matters most in our lives. I would be remiss if I didn’t take a moment to send you my sincerest thanks and let you know that YOU are among the people who matter most to…
PC Newsletter November 2024
PC Newsletter Vol 19, No. 5Nov 2024 November is a month of Thanksgiving here in the US, when we turn our focus to the people and things we are most grateful for. At the top of our list is YOU and in this newsletter, you will read about just some of the programs and activities…
PC Newsletter Jul-Sep 2024
PC Newsletter Vol 19, No. 4Jul – Sep 2024 Patients and Experts Gather in Lisbon for an Uplifting and Educational Patient Support Meeting What a fantastic time we had in Lisbon, Portugal, from September 1-3, as we connected with old friends, made new ones, and were inspired by our amazing PC community. One attendee expressed…
PC Newsletter May-Jun 2024
PC Newsletter Vol 19, No. 3May-Jun 2024 At PC Project, our mission has always been more than disease awareness – we aim to cure PC. For 20 years, that has meant giving patients real answers for why their feet and skin hurt so much (including a correct diagnosis), educating people with solid data who have…
PC Newsletter Mar-Apr 2024
PC Newsletter Vol 19, No. 2Mar-Apr 2024 Some of PC Project’s biggest events of the year are coming soon, namely our annual scientific meeting in Dallas and our patient conference in Lisbon. Of course, our activities are nonstop all year long, but we always look forward to meeting in person with our research community and…
PC News Brief Jan-Feb 2024
PC News Brief Vol 19, No. 1Jan-Feb 2024 We hope your new year has had a brilliant and happy start. Ours certainly has because the progress never stops! Highlighted below are some of the important stories and announcements in our community. And please remember to regularly check the News and Events section of our website…
PC News Brief Sept-Oct 2023
PC News Brief Vol 18, No. 5Sept-Oct 2023 If you are receiving this newsletter, you are part of our PC family in some way. You may have PC, or a similar rare skin disease. You may be waiting for your diagnosis through our registry and genetic testing services, or you may already know what disease-causing…
PC News Brief Jul-Aug 2023
PC News Brief Vol 18, No. 4Jul-Aug 2023 With all that’s happened in our PC community lately, I wanted to share some realizations I had while cultivating flower beds this summer. In early May, my husband bought a couple of flats of small flowers, not yet bloomed, to plant in the ground around our home.…
PC News Brief May-Jun 2023
PC News Brief Vol 18, No. 3 May-Jun 2023 In the past months, our community has been actively engaged in hosting our largest PC research event of the year, networking with scientists, participating in clinical trials, and educating the world about PC. For those of us with PC who have spent most of our lives…
PC News Brief Mar-Apr 2023
PC News Brief Vol 18, No. 2 Mar-Apr 2023 In this newsletter, you will read just a fraction of the activities happening in our strong, global community. During the past months, more than ever, we have seen evidence of what can be accomplished when people, with their unique talents and abilities, work together. Every person’s…
PC Newsletter Jan-Feb 2023
PC News Brief Vol 18, No. 1 Jan-Feb 2023 IMPORTANT: New Orleans PC Patient Support Meeting February 13th Deadline! We are thrilled we will be seeing many of you at the upcoming PC Patient Support Meeting in New Orleans, March 15-17, 2023. If you are planning to attend and have not yet, please reserve your…
PC Newsletter Nov-Dec 2022
PC News Brief Vol 17, No. 5 Nov-Dec 2022 Happy Holidays and PC News A Season of Giving and Thanks As we approach the end of the year, I think about all the families and individuals we’ve helped navigate life with PC. One particular individual comes to mind. Before finding PC Project through an internet…
PC News Brief Vol 17, No. 4 Aug-Oct 2022
PC News Brief Vol 17, No. 4 Aug-Oct 2022 Greetings from PC Project!This month, we are experimenting with a new way to bring you our news. Please check out the sections below for some of the happenings in our PC world.Most of all, never forget that we are always fighting for every patient in our…
IPCC Newsletters Archive 2004-2022
Each link contains a pdf with all issues for each year. You can click on the picture or the year to get to the pdf. The website search on the top page also searched these pdfs. Also, if you have the pdf open you can use “ctrl f” to search inside the pdfs. 2021202020192018 20172016201520142013201220112010200920082007200620052004
PC News Briefs Archive 2004-2022
Each link contains a pdf with all all issues for each year. You can click on the picture or the year to get to the pdf. The website search on the top page also searched these pdfs. Also, if you have the pdf open you can use “ctrl f” to search inside the pdfs. 20222021202020192018 201720162015201420132012201120092008200720062004
