Sept. 2026 | Vol 21, No. 6
In This Issue:
- Mission Progress: A Message from the CEO, Updated Mission Statement
- Research & Studies: ESDR, PC Project Grants, Clinical Trials Update
- Community & Events: Connection Circle for Parents, London Patient Support Meeting Recap, New to PC Project Orientation
- With Appreciation: Because You Stepped Up
Last week, I received a call from a person to our community - a grown man with a painful palmoplantar disorder who, with the help of AI, found PC Project. The call was very emotional as his voice broke at times because he was finally talking with someone who understood his pain and who also might be able to give him - and his affected family members - a diagnosis for the first time in his life.
This is not the first call I've had like this and it will certainly not be the last. Lately we have been averaging 30 new patients a month joining the registry. For years we have averaged 8 new patients per month. The numbers of people finding us, looking for answers, is steadily growing. But they aren't just numbers to our team. They are individuals who hurt everyday.
I am so proud that we have an organization for people to turn to, even if it's to know they're not alone and that someone is fighting for them. These are the calls that motivate me. We are relentless in our pursuit of effective treatments, but in the meantime, we are here for patients and families, right here, right now. This is an integral part of our mission and we are here for it. Thank you for being here with us, too.
Janice Schwartz, President & CEO, PC Project
PC Project Updated Mission Statement
Because we have expanded our reach to include all rare, painful palmoplantar Epidermal Differentiation Disorders, we have updated our mission statement to better define the work we do at PC Project:
"PC Project leads a global effort to improve the lives of people living with Pachyonychia Congenita and related painful palmoplantar Epidermal Differentiation Disorders by supporting and connecting patients, advancing research, and partnering with industry to accelerate the development of effective treatments and cures."
This newer mission statement emphasizes the fact that we care about all pEDD patients who come to PC Project looking for help. We especially like the world "accelerate." We need treatments now and while the process often seems slow, in truth, we are moving forward rapidly.
PC Project at ESDR 2026: Connecting, Sharing, Advancing Research
PC Project made an impact at European Society for Dermatology Research in Heidelberg, Germany, on September 9-11. For three days, we had the opportunity to connect with skin scientists from around the world - and to make sure PC and related pEDDs were part of the conversation.
A special thank you to Alain Hovnanian and Edel O’Toole for chairing our special PC Project session at the conference, and to Edel, Nicole Schwarz, Diana Blaydon, Marianne de Brito, and Janice Schwartz for presenting the work PC Project is supporting, the research we have funded, and the science we are helping accelerate.
Our exhibit table was a hub of activity throughout the conference. We talked with physicians and researchers about PC and related pEDDs, answered questions, shared our resources, and gave out every last brochure and educational item we brought, hundreds in all!
Being present at major scientific meetings like ESDR gives PC Project visibility on the world stage. For rare diseases like PC and pEDDs, that visibility matters. The more researchers who know about our diseases, our patients, and the urgent need for better treatments, the more opportunities we have to build collaborations and move research forward.
We’re grateful to everyone who stopped by our table, attended our session, asked questions, and shared ideas. We’re making sure PC and pEDDs are seen, heard, and remembered in the scientific community. For all the details, click here.
PC Project Funded Research Grants
For the 2026 PC Project grant cycle, letters of Intent and proposals are being accepted on a rolling basis. In 2027 the Annual Grant Cycle will be:
- January 1 – Letter of Intent Submission Opens
- February 1 – Letter of Intent Deadline
- March 15 – Invitations to Submit Full Applications
- June 1 – Full Application Deadline
- August 1 – Awards Announced
If you have a good research idea get all all the details including how to submit a letter of intent and apply for a grant.
Preparing for Clinical Trials
At the London Patient Support Meeting, attendees with PC/pEDD contributed to preparations for future clinical trials. Each volunteer completed a survey about their experience with PC/pEDD and took part in a Timed Up and Go (TUG) test. For the test, researchers recorded how long it took each participant to stand, walk a designated distance, and return to their original seated position. This was done first while wearing shoes, then only wearing socks, and a third time with bare feet. We know this hurts, and we appreciate the sacrifice of those who participated. Orvida Pharma hopes to use the TUG test as a way to measure whether potential treatments for PC and other pEDDs are effective at improving mobility for an upcoming clinical trial for PC patients in 2027.
Other study news:
- Orvida Clinical Trial for TRPV3/PERP pEDDs. Thank you to our TRPV3 and PERP patients who are now participating in the Orvida clinical trial. Drugs cannot get approved without clinical trials, and your help is critical in evaluating whether a therapy works. If you have a TRPV3 or PERP variation or have a patient with one and are interested in learning more about this study, please contact us right away at info@pachyonychia.org.
- K16 Biomarker Study: Thank you to the K16 patients who are helping with a biomarker study at Yale under the direction of Dr. Lihi Atzmony Maoz. The willingness of our patient community to help never ceases to amaze us.
- Potential Future Studies: PC Project is looking forward to potential studies with BioMendics and Quoin Pharmaceuticals, who have each developed topical therapies that may benefit PC/pEDD patients.
Continue reading this section in each newsletter or on the website for the most up-to-date information on PC/pEDD research and clinical trials.
Register Now! Connection Circle for Parents
Join us for our Connection Circle for Parents of PC/pEDD children on Saturday, September 19 at 9:00 MT/ 11:00 ET/ 4:00 PM BST
Connection Circles are peer-led, open discussion sessions where patients come together in a warm, supportive environment to connect with others who truly understand the journey of living with PC.
Whether you're looking for practical tips, encouragement, new friendships, or simply a place to feel heard, Connection Circles offer a safe space to ask questions, share experiences, and learn from one another. Every conversation helps build a stronger, more connected community.
We will be joined by Dr. Sancy Leachman, who will share her expertise on what we’ve learned about helping children develop resilience while living with painful, rare, chronic conditions.
Come as you are, participate as much or as little as you'd like, and discover the strength that comes from connecting with others. We hope you'll join us!
Stronger Together in London
What a wonderful few days in London! PC Project’s 2026 Patient Support Meeting brought together more than 110 members of the global PC/pEDD community, including 50 patients from 17 countries, as well as family members, researchers, physicians, and industry partners.
The meeting was filled with learning, connection, and meaningful conversations. Participants had the opportunity to share experiences, exchange practical advice, hear the latest updates in PC/pEDD research and care, and connect with others who truly understand life with PC/pEDDs. Photos and a recap of the tips and tricks that were shared at the London meeting are now available on the London PSM webpage.
Most importantly, the meeting reminded us of the strength of our community. Coming together creates hope, builds lasting connections, and inspires us to continue working toward better treatments and an end to the pain of PC/pEDDs.
Thank you to everyone who joined us and helped make the London Patient Support Meeting such a tremendous success!
Save the Date!
Our next Patient Support Meeting will be in Orlando, Florida, May 9-11, 2027.
Many thanks to the organizations who made the London Patient Support Meeting possible. That includes representatives from Orvida Pharma, who worked with us at the meeting on developing endpoints for an upcoming clinical trial and researchers from Ten Bio who helped with many logistical tasks - and who provided a fun afternoon of science for the children's session. Finally, we include us - PC Project - as a sponsor because our organization funded the bulk of the cost.
These meetings take a lot of resources but they are always worth it and we're so grateful for all the help of sponsors, medical and scientific experts, volunteers, and those who give to our cause.
New to PC Project? We are here for you!
Join PC Project CEO Janice Schwartz for on a live Zoom meeting where you'll learn about the resources, programs, and support available to you through PC Project. It's also a wonderful opportunity to ask questions, meet with our leader who understands the PC/pEDD journey, and discover how to stay connected with our community.
We will have two separate sessions to accommodate as many time zones as possible. Choose whichever one is most convenient for you.
We look forward to welcoming you to the PC Project community!
Click here to register for one of our welcome sessions.
Because You Stepped Up
Thanks again to all who created fundraisers, shared your stories, and donated to our Peer-to-Peer fundraiser in August. We know it's not easy to talk about a rare skin disorder, but you did it! The grand total donated was $52,954, and with the 2-for-1 match, that adds $105,908, making the full amount raised $158,862.
This may not seem like a huge amount in the research world, but we are able to use these precious donations to fund specific science projects - some that were recently funded because of your actions and generosity.
We so appreciate the goodness of all who step up for people who hurt with every step they take - at any time of the year, including those who do Facebook fundraisers.
Finally, we sometimes receive anonymous gifts - for this campaign and in general - often through Donor Advised Funds. We may not know your name, but please know we are sincerely grateful for your kindness and belief in our very important work.
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