PC Newsletter
Vol 20, No. 3
May 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 Patient Support Meeting
- An Epic Day for PC Science: 2025 IPCC Symposium
- When You’re Rare, Visibility Matters: 2025 SID
- PC Advocates Go to Capitol Hill
- Pilot Study for PC and TRPV3 Patients
- PC Research Update: Cracking the Code of PC-related Cysts
- A New Member of the PC Project Team
- PC Awareness Month Sneak Preview
Uplifted and Inspired: 2025 PC Patient Support Meeting
Learning, laughter, and love were in abundance in San Diego, California, as we shared, taught and inspired one another at the 2025 Patient Support Meeting May 4-6, 2025 in San Diego, California.
Being with people who really understand what it’s like to live with PC is emotional, uplifting, educational, and so much fun! Oh how we love our PC family!
Thank you to BioMendics, Kamari Pharma, and Ten Bio for joining PC Project in supporting this event. And special thanks to the many volunteers in our community who led discussions, gave presentations, and stepped up to help in a myriad of ways. We may be small staffed, but we have big-hearted people who serve to make our events a huge success.
Enjoy the slideshow below, put together by the Ten Bio team, that was shown on the last day of the meeting. This video highlights just a small portion of the amazing conference we had with patients, loved ones, researchers, physicians, and pharma representatives.
An Epic Day for PC Science
Sometimes we have to pinch ourselves – it’s hard to believe there’s so much interest in our rare skin disease right now. Yet the International PC Consortium Symposium, one of PC Project’s biggest events of the year, exceeded all expectations.
Held on May 7, 2025, as part of the Society for Investigative Dermatology (SID) Meeting in San Diego, California, the annual IPCC Symposium brought together a packed room full of dedicated group of experts. Our goal: to present cutting-edge research and engage in meaningful discussions on how best to advance science for PC and other painful palmoplantar epidermal differentiation disorders (pEDDs).
In short, the symposium was epic. Following a morning of compelling scientific presentations, we had a 90-minute “working lunch” where all attendees participated in a dynamic and collaborative discussion.
A heartfelt thank you to all the scientists and physicians who joined us, both in person and virtually. If you missed it, you can find more details and watch the full symposium recording on our website or our YouTube channel.
Read all about the symposium here.
When You’re Rare, Visibility Matters – PC Project at SID
After our IPCC Symposium, PC Project representatives participated with the greater SID Annual Meeting.
Why does PC Project attend conferences like the SID?
To build connections, raise awareness about painful PC and other rare skin diseases in our patient registry, share our research efforts, and spotlight our amazing global community. When we are as rare as PC, we need all the visibility we can get!
PC Project appreciates the supportive SID leaders who believe in small organizations like ours and who kindly gave us free exhibit space.
Watch our short video above to learn more or on our website.
PC Advocates Take Their Voices to Capitol Hill
PC and PC Project were represented by PCer Robert Santos and his lovely wife, Shannon, on Capitol Hill in Washington, D.C. on May 20th with the Coalition of Skin Diseases (CSD). This powerful group of patient advocates spent one day being instructed, and the next day, visited the offices of House and Senate leaders to share their personal stories and make specific asks.
We extend our gratitude to Robert and Shannon, for volunteering their time to share their personal stories and represent PC patients and others living with skin diseases. Bob and Shannon spoke directly with lawmakers about key bills and funding that could impact the lives of millions of people living with skin diseases. See more photos here.
Also thanks to the CSD for sponsoring this important event – a vital step in making sure our voices are heard by those who have the power to create real and meaningful change for patients like those with PC who suffer each day from skin diseases.
Pilot Study for PC and TRPV3 Patients
PC Project is partnering with Kamari Pharma to help develop meaningful endpoints for a future clinical trial.
One of the biggest challenges in designing clinical trials for rare skin diseases like ours is knowing exactly how to measure whether a treatment is working.
On June 20, PC and TRPV3 patients will gather in London to participate in activities and assessments that will support this important project. No drug or treatment will be given to patients.
This pilot study, now fully enrolled, includes 16 patients from the UK—all members of the International PC Research Registry with genetically confirmed PC or TRPV3 variants—who will come together to contribute.
This is how we operate in our community: we work together, collaborate, and each person plays a vital role in our quest to #EndThePain.
Cracking the Code of PC-Related Cysts
PC Research Update: by Marianne de Brito, a Medical Research Council Clinical Research Fellow at Queen Mary University of London
“I was delighted to present my research on Steatocystoma Multiplex (SM) at this year’s annual meeting of the British Society of Investigative Dermatology (BSID).
My group, led by Professor Edel O’Toole, is especially interested in understanding how cysts begin to form. We believe that understanding these early steps could pave the way to new treatments to prevent cysts altogether.
To explore this, we collected biopsies from patients of both early cysts and more established, larger cysts. I’ve spent a lot of time examining them under the microscope for unusual and interesting features. We then used a cutting-edge technique called spatial transcriptomics to understand what genes are active during early cyst formation, helping us to uncover the molecular pathways involved.
Excitingly, we’ve identified some pathways which are already targeted by drugs currently used in other conditions.”
Welcome to the PC Team, Paulina!
Please join us in welcoming Paulina Crossley to the PC Project team. Paulina joined earlier this year as a part-time Executive Assistant and plays a key role in supporting our growing patient registry. If you’ve registered since January 2025, you’ve likely heard from her.
Originally from Chile, Paulina is a native Spanish speaker, She’s married and has two daughters ages 10 and 7.
Paulina first met PC patients as a teenager, and has watched them live fulfilling lives, despite the challenges of PC. She’s enjoyed connecting with PC patients for the last few months and looks forward to the day when she can share with them the news of life-changing treatments and a ultimately a cure for PC.
PC Awareness Month is Almost Here!
As powerful as our events and activities are, real change happens when we speak up. How will scientists know we need help if they’ve never heard of PC? How will research move forward if no one donates? And how will drug developers know we’ve been waiting far too long for real treatments if we stay silent?
That’s why PC Awareness Month exists – so the world (and our friends and neighbors) – can finally hear our voices.
This June, we’re turning up the volume like never before. And here’s a sneak peek: Our very own board chair, inspired by a recent patient meeting, is stepping out of the shadows to share his story. No more hiding – it’s time to #EndThePain.
We’ll be inviting you to join us in making this our most impactful PC Awareness Month yet. Watch your inbox and follow us on social media – big things are coming.
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