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.
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!
Thank you to all of our patients, families, clinicians, researchers, scientists, and advocates for making this meeting so special.
We are especially grateful to our experts for generously sharing their time, knowledge, and dedication, and to our patients and families for sharing their experiences and supporting one another.
Together, we are driven by love, guided by science, and united in hope for better treatments and a brighter future for all those affected by PC and related pEDDs.
Date: September 3-5, 2026
Venue: Radisson Hotel & Conference Centre London Heathrow, Bath Road, West Drayton, Greater London UB7 0DU
2026 London PC/pEDD Patient Support Meeting Program
Program subject to change. Click to download the program at a glance pdf.
Thursday, September 3
Location: Discovery Ballroom
4:00–6:00 PM — Meeting Check-In
6:30–8:30 PM — Welcome Dinner
Join us for dinner, announcements, introductions, and a warm welcome to the PC/pEDD community.
The Power of Sharing Your PC Story
Alicia, Liv, and Max — PC/pEDD Patient Ambassadors
Hear from our PC/pEDD Ambassadors about the importance of sharing our experiences, connecting with others, and helping raise awareness.
After-Dinner Gene Group Gatherings
Patients, family members, clinicians, and researchers are invited to gather in smaller groups based on PC/pEDD type:
Group 1: K6a / K17 / TRPV3
Brandon Percle & Charlotte Thompson
Group 2: K16 / DSP / FAM83G / RHBDF2
Nicolas Skinner & Lorraine Hurley
Group 3: K6b / K6c / DSG1
Phil Gard & Jacqui Russell
At the same time, kids and teens are invited across the hall to the Endeavor Room for a quick game and time together with the PC Kids Club leaders.
Friday, September 4
PC Kids Club
9:00 AM–4:00 PM
Location: Endeavor Room
Teens are also welcome.
A full children’s program will run parallel to the adult sessions with fun activities, scientific experiments, and age-appropriate discussions about PC/pEDDs and living with a rare skin disorder.
9:15 AM — What Are PC/pEDDs?
Cory Simpson, MD, PhD & Max Morris, Patient Ambassador
A kid-friendly discussion about PC, pEDDs, and what makes these rare skin conditions different.
1:30 PM — How We Feel and Deal with PC
Discussion Leaders: Tom Baker, Tim Baker & Roseann McGrath
An opportunity for children and teens to talk about the feelings, challenges, and experiences that come with living with PC/pEDDs.
2:00 PM — Science Lab Live!
Michael Conneely, PhD & Robyn Hickerson, PhD
Join Dr. Robyn Hickerson and Dr. Michael Conneely for exciting hands-on experiments, amazing demonstrations, and a chance to think like a scientist!
Friday, September 4
Adult Program
Location: Discovery Ballroom
Session 1: Understanding PC & pEDDs
Chair: Edel O’Toole MD, PhD
9:00 AM — PC Project Update: Driven by Love, Guided by Science
Janice Schwartz
9:15 AM — Clinical Overview & New Insights: Pediatric Features
Rebecca McCarthy, MD
9:30 AM — Palmoplantar Skin: What Makes It Different from the Other Skin on Your Body?
David Kelsell, PhD
9:45 AM — PC and Pain: Presentation & Group Discussion
David Hansen, MD
10:30 AM — Group Photo (Kids will join Adults) & Break
Session 2: Research & Hope
Chair: Cory Simpson, MD, PhD
10:45 AM — Research Updates Across PC/pEDDs
Edel O’Toole, MD, PhD
11:05 AM — The Right Cells for the Job: Building Better Models for Studying Palmoplantar Skin Conditions
Diana Blaydon, PhD
11:20 AM — Genetics Made Simple & siRNA Therapy
Robyn Hickerson, PhD
11:35 AM — Medical & Scientific Panel: Questions and Answers with PC/pEDD Experts
Panelists:
Diana Blaydon, PhD; David Hansen, MD; Robyn Hickerson, PhD; David Kelsell, PhD; Rebecca McCarthy, MD; Edel O’Toole, MD, PhD; and Cory Simpson, MD, PhD
12:15 PM — Lunch
Session 3: Living with a Rare Disease
Chair: Juli Bennett
1:30 PM — How We Feel and Deal While Living with a Painful Disease
Full Group Discussion: The Emotional, Mental, and Social Impact of PC and Related pEDDs
Moderated by Kate Fairbrother
2:15 PM — Insights from Family Members Who Do Not Have PC or a Related pEDD
A full-group discussion about the experiences of parents, spouses, partners, siblings, and other family members.
Moderated by David Schwartz, parent and spouse
Featuring Samantha Rabone, parent, and Julie Peconi, parent and spouse
3:00 PM — Break
3:20 PM — Group Discussions by PC/pEDD Type
Physicians, researchers, parents, and family members are encouraged to join the discussion groups. Patients who are comfortable doing so may also share their hands and feet with attending medical experts.
Group 1: K6a / K17 / TRPV3
Brandon Percle & Charlotte Thompson
Group 2: K16 / DSP / FAM83G / RHBDF2
Nicolas Skinner & Lorraine Hurley
Group 3: K6b / K6c / DSG1
Phil Gard & Jacqui Russell
4:00 PM — Free Time
6:30 PM — Dinner
Location: Discovery Ballroom
Enjoy dinner together followed by some fun!
PC/pEDD Quiz
Led by Claudia Avella-Garcia
Community Raffle
Tony & Teresa Hurley
Everyone will receive one raffle ticket, with additional tickets available to help offset the costs of holding the meeting.
Want to contribute to the raffle?
Bring a favorite item to share—it can be something new or gently used, something that represents where you are from, a non-perishable food item, a toy, or just something fun. Big or small, anything goes!
Saturday, September 5
PC Kids Club
9:00 AM–12:00 PM
Location: Endeavor Room
Teens are also welcome.
A full children’s program will run parallel to the adult sessions with fun activities, scientific experiments, and age-appropriate discussions about PC/pEDDs and living with a rare skin disorder.
At 12:00 PM, children will join the main program for the meeting slideshow and closing activities.
Saturday, September 5
Adult Program
Location: Discovery Ballroom
Session 4: Looking to the Future
Chair: David Hansen, MD
9:00 AM — Welcome & Announcements
9:05 AM — Building Synergy Among EDD Researchers and Disease Models to Discover New Therapies
Cory Simpson, MD, PhD
9:20 AM — Empowering Patients: Innovation & Hope for Rare Skin Diseases
Dayana Michel, MD, Orvida
9:35 AM — Medical, Scientific & Pharmaceutical Panel
Questions and answers about drug development, clinical trials, emerging therapies, and other PC/pEDD-related topics.
Panelists include David Hansen, MD; Robyn Hickerson, PhD; Dayana Michel, MD; Edel O’Toole, MD, PhD; Cory Simpson, MD, PhD; Shelly Leibman-Barak; and Liora Braiman, PhD.
10:15 AM — Break
Session 5: Learning from One Another
Chair: Tom Baker
10:30 AM — Caring for pEDDs: Bring Your Tricks, Tips & Tools
Bring your favorite trimming tools, socks, footwear, mobility aids, products, daily routines, and other practical ideas to share with the group.
Discussion Leader: Kerry O’Keefe
11:00 AM — Raising Strong pEDD Kids: Helping the Younger Generation Succeed
Discussion Leader: Claudia Avella-Garcia
11:30 AM — Living a Happy Life with a Painful pEDD
Full Group Discussion
Discussion Leader: Janice Schwartz
12:00 PM — Closing Remarks & Meeting Slideshow
12:15 PM — Closing Lunch & End of Meeting
Below are messages from peers who have previously attended a patient support meeting, addressing the question: What would you say to someone who has just learned they have PC and is nervous about attending a patient support meeting?
