News & Events
Keeping up to date in the PC/pEDD world
Pachyonychia Congenita News
Allison and Bubbles: Chasing Dreams with PC
Allison Block loves horses. She also lives with pachyonychia congenita (PC), a genetic condition that causes painful calluses on the…
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Tiny Needles, Big Possibilities
We’re grateful to PhD student Manuel Klumpp for presenting his research at the Microneedles and Transdermal Delivery Forum in Providence,…
PC Project Welcomes Dr. Eric Lane as Development Director
PC Project is growing—and we’re excited to welcome Dr. Eric Lane as our new Development Director. Eric brings extensive experience in…
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New to PC Project?
Join PC Project CEO Janice Schwartz on Zoom for an orientation where you’ll learn about the resources, programs, and support…
Connection Circle: Parents
Join us Saturday, September 19th for parents helping parents. Raising a child with PC and other pEDDs comes with unique…
PC Project Connection Circles
Introducing PC Project’s New Way to Unite and Serve our Community PC Project is excited to announce our newest community…
Thank You, Jim!
Thank You, Jim: A True PC Warrior After years of dedicated service, longtime Board member Jim Rittle is stepping down from the PC…
Step Up For PC: Peer-to-Peer Campaign
Imagine if every step hurt For most people, taking a walk is something they never think twice about. For someone…
July Town Hall
Expanding Our Reach: Mission Expansion Q&A For more than 20 years, PC Project has worked to improve life for people…
Expanding Our Reach
An Important Update About the Future of PC Project We are sharing an important update about the future of PC…
Swing Fore PC Raises $6,308.46 CAD for the PC Community
Thank you to James, Quinn and Blake Robertson for organizing their inaugural Swing Fore PC golf tournament. Their creative organization made the fundraiser a huge…
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PC and pEDDs at World Congress on Rare Skin Diseases
The World Is Paying Attention to PC and pEDDs We were so pleased to see Pachyonychia Congenita (PC) and related painful palmoplantar Epidermal…
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PC Research Presented at British Association of Dermatologists Conference
PC Project and data from our registry were represented by researchers from Queen Mary University of London during the 106th…
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Welcome to the PC Project Team
PC Project Welcomes Juli Bennett and Alicia Cherrington to Communications Team PC Project is pleased to welcome two new members to its communications…
Job Posting: Development Coordinator
Looking for a passionate fundraiser to join our team! Organization: PC Project (Pachyonychia Congenita Project)Reports To: President/CEOEmployment Type: Part-Time (with potential for…
A Pioneer in Vietnam
Q&A With Dr. Vu Van Quang A Pioneer in Vietnam: Bringing Hope to Patients with Pachyonychia Congenita Over the past decade, Dr. Vu…
A Lemonade Stand with a Purpose
Lemonade Stand Raises More Than $400 for PC Research. A neighborhood lemonade stand raised more than $400 for PC Project on…
Clinical Trial Opportunity for Olmsted (TRPV3/PERP variants)
A clinical trial specifically for patients 18 and older with TRPV3 or PERP gene variants (Olmsted Syndrome) has begun enrolling…
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PC Awareness Month – June 2026
“What people don’t see is…” Every day, people living with Pachyonychia Congenita (PC) hide pain, limitations, fear, and exhaustion that…
Advancing PC Research at the SID Meeting
PC Project spent time in Chicago, IL, from May 13-15, at the Society for Investigative Dermatology Annual Meeting, which brings…
PC/pEDD Medical Provider Directory
With patients across the United States and in over 60 countries, PC Project is often asked by patients or caregivers…
Advocating for PC on Capitol Hill
Many thanks to our three incredible PC advocates – Jolena Miller, Rylee Defebaugh, and Harlon Pickett – who represented PC…
Orvida Clinical Trial for OS Has Launched: PC Trial is Next
The Orvida clinical trial for Olmsted Syndrome (TRPV3-pEDD and PERP-pEDD) has begun and is currently underway in the UK, France,…
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Firewalk 2026
We are incredibly grateful to the families in our community who turn their personal challenges into action that helps others.…
Join The Steady Relief Circle – Support PC/pEDD Families Year-Round
At PC Project, there are moments we hear about again and again from people living with Pachyonychia Congenita (PC) and…
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Pachyonychia Congenita Named in New NIH Rare Skin Disease Research Priority
Important NIH News for Our PC & pEDD Community and Research Partners We are excited to share that the National…
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Researcher Awarded for Outstanding Scientific Presentation
Honoring Research That Gives Hope to K17-pEDD-PC Patients Congratulations to Marianne de Brito on being named one of five winners…
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PC & pEDDs represented at the 2026 AAD annual meeting
At the 2026 American Academy of Dermatology Annual Meeting in Denver, our CEO, Janice Schwartz, was honored to present on…
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Share Your Story
We’d Love to Hear Your Story So many of you inspire us every day, and yet we know how hard…
Swing Fore PC – Golf Fundraiser
James Robertson, a member of our PC family, has organized a Swing Fore PC Golf Fundraiser to raise support Pachyonychia…
In Loving Memory: Robert Paul Lindfors (Bob)
The PC Project community is deeply saddened by the passing of Robert Paul Lindfors — Bob to so many of…
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Living with Pachyonychia Congenita – Jack Padovano
Most people who know me don’t know this about me: I have a rare, painful genetic skin disorder called Pachyonychia Congenita…
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Rare Disease Day 2026
Rare Is Real. Rare Is Personal. Every rare disease has a face. For Pachyonychia Congenita (PC), one of those faces…
State of the Organization
By Jack Padovano & Janice Schwartz With the start of a new year, we reflect on the progress we’ve made…
2025 Gratitude Wall
Introducing a new way to thank people who help make our critical mission possible. This season, we’re celebrating the incredible…
Giving Tuesday 2025 – End the Pain
This Giving Tuesday help bring hope to those living with Pachyonychia Congenita (PC). Every step hurts. For people living with Pachyonychia…
PC Project at the 2025 Montagna Symposium
Building Connections for PC Research Thank you to Dr. Sancy Leachman for the invitation to the Montagna Symposium held in…
Collaborating for Kids: PC Project at the PeDRA 2025
PC Project participated in the PeDRA (Pediatric Dermatology Research Alliance) Annual Conference in Minneapolis on October 9-11, 2025.Our goal: to…
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PC Advocate Shares Experiences at Rare Skin Disease Meeting in Spain
PC Project advocate Pamela Ibañez Triguero recently represented the PC community at a special meeting in Spain on October 3rd,…
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PC Project Makes Global Connections at EADV 2025
In September 17-20, 2025, for the first time, PC Project was at #EADV2025 (European Academy of Dermatology and Venereology) —…
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First International Symposium on EDDs Unites Experts and Patient Advocates
In September 2025, having approximately 60 experts gather for the First International Symposium of EDDs (Epidermal Differentiation Disorders) to focus…
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End the Pain: Join the Campaign to Help People Living with PC
Every step hurts. From the Bottom of Our Hearts — Thank You! Our first-ever Peer-to-Peer Fundraising Campaign was nothing short of extraordinary…
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Tips for Going Back to School
Going back to school can be stressful, especially for students with PC. However, with preparation, support, and understanding, returning to…
NIAMS & NCATS Director’s Meeting with PC Project
PC Project, represented by Pierre Coulombe and Janice Schwartz, met with 14 NIAMS, and NCATS directors from the NIH on…
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Palmoplantar Keratoderma Diseases Reclassified by Gene Name
PC and the other rare genetic skin diseases with PPK in our registry are now classified in a larger group…
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Different Like Us!
We’re proud to see our PC community represented in Different Like Us!, a new book celebrating over 40 children from…
PC Research Update by Diana Blaydon, PhD
PC Project awarded Dr. Diana Blaydon of Queen Mary University of London a two-year £144,581 grant to make in vitro models…
Camp Discovery
Every summer, the American Academy of Dermatology (AAD) sponsors five (5) one-week sessions of Camp Discovery — a camp designed…
Welcoming Five New Leaders to the PC Project Board!
We’re thrilled to announce the addition of five exceptional new members to the PC Project Board of Directors. Their diverse backgrounds, passion…
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With Gratitude to Jason Hunter and Kay Dee Holmes
We extend our deepest thanks to two longtime Board members—Jason Hunter and Kay Dee Holmes —who have recently stepped down…
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PC Proteomics at ASMS 2025
PC Research Report by Dr. Sara Ceccacci I was thrilled to present the results of my postdoc at this year’s…
PC Project at the 2025 SID
Exhibiting, networking, and educating experts about PC and the work of PC Project Why does PC Project exhibit, distribute brochures,…
PC Awareness Month – June 2025
Help Us End the Pain June is PC Awareness Month – Help Us End the Pain PC is a rare,…
CSD Hill Day 2025
PC Project Representatives tell their stories on Capitol Hill as they advocate for NIH funding for skin disease research PC…
PC Research Update: by Marianne de Brito
A Medical Research Council Clinical Research Fellow at Queen Mary University of London working on cysts that afflict especially K17…
Join the PC Project Board of Trustees
Help Lead the Future of PC Research and Support! PC Project is growing, and we need dedicated, passionate individuals to join our…
PC Research Update: by Marta Garcia Diez
Developing experimental treatments to eliminate the defective gene in KRT6A using the CRISPR/Cas technique In a previous study in our…
Drawing Contest My Skin Tells a Story 2025
The René Touraine Foundation is coordinating an initiative to raise awareness among young people about rare skin diseases through an…
PC and PC Project Represented at AAD 2025
PC Project, and especially you, our patients, were represented at the 2025 American Academy of Dermatology (AAD) Conference, which is…
CSD Development Day 2025
Networking and Learning from Other Skin Disease Organization Leaders The Coalition of Skin Diseases is a powerful group of US-based…
Dermatology Nurses Association Conference 2025
Educating dermatology nurses about PC and the work of PC Project David and Janice Schwartz from PC Project spent two…
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Rare Disease Day 2025
Rare Disease Day was February 28, and you came through to tell the world more about us! Our goal was…
Parenting Strategies
Ideas for parents raising children with PC or other rare skin diseases If you have been to a Patient Support…
My PC Valentine 2025
Who is your PC Valentine? Share the love by participating in #MyPCValentine campaign! Write a short description of why that…
#StepUpForPC – GivingTuesday 2024
“When you have PC, you get really good at counting steps. For me, I am constantly calculating how much walking…
PC Represented at the 2024 Genomics for Dermatology Course
Our executive director, Janice Schwartz, was invited to speak as part of a three day course, Genomics for Dermatology, at…
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Grants Awarded for Pachyonychia Congenita Research Projects
PC Project is pleased to announce the award recipients of the 2024 PC Research Grant cycle, with nearly $350,000 worth…
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ASHG 2024
PC Project’s collaborative work with Fulgent Genetics was represented by Shabri Rathod, MS, CGC, a laboratory genetics counselor, at the…
Thank You for Your Feedback!
Results from the Newsletter and Community Engagement Survey We extend a heartfelt thank you to everyone who participated in our…
PeDRA 2024
Thank you to the Pediatric Dermatology Research Alliance team for giving patient organizations like ours a voice and an excellent…
Running for PC
PC Supporter Runs Windsor Half Marathon to Raise Awareness and Funds for PC Patients Samantha Hassen is an excellent example…
PC Project Invited to Participate at 2024 ESDR Meeting in Lisbon
Representatives of our pachyonychia congenita community exhibited and spoke at a special Patient Session We extend our sincere thanks to…
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2024 PC Leadership Planning Meeting
Key scientists and doctors strategize on the best ways to move pachyonychia congenita research forward Select members of PC Project’s…
Quinoa Harvest & Andean Festival 2024
A special fundraiser for those who suffer from painful calluses Thanks to all who joined us as we to celebrated…
PC Project Awards Gene Editing Delivery Grant
Awarded a total amount of €55,500 in installments of €18,500 per year for three (3) years. The funding will be…
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2nd World Congress of Rare Skin Diseases
Joining forces in Paris with researchers and physicians who care about rare PC Project’s Executive Director, Janice Schwartz, participated with…
PC Awareness Month – June 2024
Are you ready to spread the word about PC? #WalkInMyPCShoes Upload A #Walkinmypcshoes video Donate June is PC Awareness Month,…
PC LOVE BUILDERS 2024
Be one of the givers who sustains the mission of PC Project Supporters like you are the reason why PC…
International Experts Convene in Paris, France to Reclassify PPKs and Ichthyoses
PC Project is participating with a group of international experts to reclassify ichthyoses and palmoplantar keratodermas. The group of 18…
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Non-PC Variants in the Registry
PC Project Supports Patients with Painful PPK As the International Pachyonychia Congenita Research Registry continues to grow, and because we…
Mom Spreads PC Awareness in the Workplace
Claudia Avella, from Spain is a mom of a PCer and an active member of our international PC community. Not…
Selected Publications
There are over 700 articles available in the Published Research Articles section of the website. To assist in identifying articles…
Rare Disease Day
Thursday, February 29 is Rare Disease Day. It’s a time when people all over the world come together to shine…
My PC Valentine
Who is your PC Valentine? Share the love through the #MyPCValentine campaign and let us know who yours is! We…
Raise Funds for PC by Shopping
A simple way to raise money to help those with PC while doing something you would do anyway! Shopping online…
PC Project Donor Impact in 2023
Many thanks to our loving PC community for helping make 2023 one of our most successful years yet. With your…
PC Research Agenda
One of PC Project’s high-priority strategic goals was developing and disseminating a PC Research Agenda (RA). The RA was a…
Edel O’Toole, PC MSAB Member, receives Moxon Medal
Congratulations to Professor Edel O’Toole, the first woman to receive the prestigious Moxon Medal since its inception in 1891 from…
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PeDRA Conference 2023
PC Project exhibited, networked, and educated pediatric dermatologists, researchers, and medical students at the annual meeting in Atlanta
Living With Pachyonychia Congenita: Patient Perspectives and Activism
Over the past year, to raise awareness about PC Project and the patients who live with this rare and painful…
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NIAMS Coalition Outreach & Education Meeting 2023
PC Project attended the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition Education & Outreach meeting on…
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Sol-Gel Phase 1 Update
Erlotinib ointment 3.5% and 5% were investigated by Sol-Gel on healthy volunteers in maximal use condition. Following 28 days of…
Coalition of Skin Diseases Video features PC
https://youtu.be/iQXLdXTN0Yk We are grateful to Executive Director, Janice Schwartz, for going outside of her comfort zone to be filmed while…
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An Open Letter to Palvella
A Message of Gratitude and Hope from Jack Padovano, PC Project Board Chair Dear Wes and the entire Palvella Team,…
