Aug 2026 | Vol 21, No. 5
In This Issue:
- Community & Events: Connection Circles, Back to School, Town Hall Recap, London Patient Support Meeting
- Research & Studies: PC Project Grants, ESDR, Publication Highlights
- Get Involved: Peer-to-Peer Campaign, Make-a-Will Month
- With Appreciation: Thank You, Jim!
Introducing PC Project Connection Circles
PC Project is excited to announce our newest community program, Connection Circles. Connection Circles are virtual 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 and related pEDDs.
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.
Come as you are, participate as much or as little as you’d like, and discover the strength that comes from connecting with others.
Our first Connection Circle is especially for parents of PC/pEDD children on Saturday, September 19 at 9:00 MT/ 11:00 ET. Sancy Leachman, MD, PhD, one of our experts experienced working with families and children with PC/pEDDs, will be joining our group discussion.
Register for the Parent Connection Circle
Back to School Resources
A new school year brings new opportunities, new routines, and sometimes new challenges, especially for children living with PC. Whether your child is starting preschool, heading into high school, or somewhere in between, a little preparation can go a long way in helping them have a successful and comfortable year.
PC Project has created resources to help families educate teachers, prepare for school activities, advocate for accommodations, and learn from the experiences of other parents and patients. From practical classroom strategies to everyday management tips, these tools are designed to help your child thrive while living with PC.
Before the school year gets into full swing, take a few minutes to explore these helpful resources:
- 📚 Back-to-School Guide – Practical suggestions for preparing teachers, classmates, and school staff, along with ideas for classroom accommodations and communication. Visit Back-to-School Guide.
- 🧒 Living with PC for Children – Age-appropriate guidance for children and families, including school trips, activities, friendships, and growing up with PC. Visit PC for Children.
- 💡 Tips & Tricks – Discover practical ideas shared by the PC community for managing daily life, reducing discomfort, and navigating school with confidence.Visit Tips and Tools.
- 📄 PC Brochures – Download or request brochures to share with teachers, school nurses, coaches, and administrators to help them better understand PC and the accommodations your child may need. PC Project encourages families to use these educational materials when introducing PC to schools. Visit PC Brochures.
Remember, you don’t have to figure it all out on your own. Every school year is a chance to build understanding, advocate for your child, and create an environment where they can succeed. PC Project is here to support your family every step of the way.
Expanding Our Reach: July 21 Town Hall Recap
After many months of study, discussion, expert consultation, and careful consideration, the PC Project Board of Directors approved a soft rebrand that better reflects both the evolving science and the broader palmoplantar Epidermal Differentiation Disorder (pEDD) community we serve.
In addition to pEDDs with KRT6A, KRT6B, KRT6C, KRT16, and KRT17, PC Project’s registry and community also serves other pEDDs such as AAGAB, DSG1, DSP, GJB2, GJB6, KRT1, KRT5, KRT9, PERP, RHBDF2, SERPINB7, SLURP1, TAT, TRPV3, and more. These patients are cherished members of the PC Project community – they all hurt and they all need effective treatments.
Click here to watch the recording of the Town Hall that provides the details of why this expansion is important for both patients and ongoing research.
Generations of Strength: Astrid’s Story
The countdown is on for our London Patient Support Meeting, and we can’t wait to connect with patients, families, and caregivers from around the world. Whether you’re joining us for the first time or reconnecting with familiar faces, we’re excited to spend this meaningful time together.
Special thanks to Orvida Pharma for supporting part of our meeting. We look forward to hearing from them and helping with clinical trial preparations while at the conference.
If you aren’t able to attend in person, be sure to follow PC Project on social media for photos, highlights, and updates throughout the meeting. We look forward to sharing the experience with our entire community!
Finally, to get us ready for the support meeting, listen as one of our patient ambassadors, Max Morris, talks about what it’s like to meet another person with PC for the first time and how it’s affected him.
PC Project Funded Research Grants
PC Project is investing in the next generation of research. Our 2026 Research Grant Program is now accepting applications on a rolling basis to support innovative research on Pachyonychia Congenita (PC) and related painful palmoplantar epidermal differentiation disorders.
The first step is to submit a Letter of Intent (LOI). Researchers worldwide are encouraged to apply. Selected applicants will be invited to submit a full proposal.
In 2027 Annual Grant Cycle will be:
- January 1 – LOI submission opens
- February 1 – LOI deadline
- March 15 – Invitations to submit full applications
- June 1 – Full application deadline
- August 1 – Awards announced
Learn more and apply at pachyonychia.org/apply-for-a-grant.
PC Project at the European Society for Dermatological Research Annual Meeting
PC Project will have a special scientific (and lunch) session during the main program of the European Society for Dermatological Research (ESDR) on September 10, 2026 at 13:15 in Heidelberg, Germany.
If you’re coming to the ESDR, plan to join us for an hour of excellent research AND a free lunch!
The session, “Rare Skin Diseases, Broad Insights: From Keratins to Therapeutics in Pachyonychia Congenita and Related Painful Palmoplantar Epidermal Differentiation Disorders (pEDDs),” will highlight recent scientific advances, demonstrating how rare disorders can provide broad insights into skin biology and translational medicine.
Learn more about the session and our featured speakers here.
Publication Highlight and Recent Research Articles
Thanks to your support and the work of our International PC Project Consortium, research in our disease space continues to progress rapidly. We want to highlight one particular article that documents significant findings funded by PC Project.
Ceccacci, S., Roger, K., Marchal, L., Ragot, H., Schwartz, J., Coulombe, P. A., Guerrera, I. C., & Hovnanian, A. (2026). Proteomics reveals altered lipid biosynthesis and keratin hyperphosphorylation in pachyonychia congenita. The Journal of investigative dermatology, 146(7), 1906–1917.e5.
This work generated the most comprehensive proteomic and phosphoproteomic dataset to date from full-thickness PC skin biopsies provided by patients.
Now PC Project is funding the second phase of the project – the analysis of the proteomic and transcriptomic database with spatial and single cell information, which will enable our scientists to identify major biological pathways at the molecular level and in a spatial context on lesional plantar skin sections. This will lead to drug identification by in silico drug repurposing, and validation of the best candidate drugs in vitro using 2D cultures of primary keratinocytes from PC patients.
This is exciting, cutting-edge research, made possible by our donors. Also, note that while not all the work we are doing has been published, having peer-reviewed findings in high quality scientific journals is critical to our progress.
Below are other relevant research articles. Feel free to explore them by searching PubMed by the title or author:
- Ahmed S, Cesarato N, Li Y, et al. Bi-Allelic DSG1 Splice-Site Variant Identified in a Family With Non-Syndromic Striate Palmoplantar Keratoderma. J Dermatol
- Shehade M, Zagairy F, Danial-Farran N, Liaks M, Barak EC. Autosomal Recessive Palmoplantar Epidermal Differentiation Disorder Caused by Homozygous Stop-Gain Variant in KRT16 Gene. Pediatr Dermatol.
- Zhong Q, Zhang Y, Feng Z, Zhang J, Chen B. Case Report: Successful topical simvastatin therapy in a 2-year-old girl with keratin 16-associated palmoplantar epidermal differentiation disorder. Front Pediatr.
- Mateu-Arrom L, Iznardo H, Roé E, Baselga E, Puig L, Morales-Munera C. Botulinum toxin for pachyonychia congenita: a case report on the management of loss of therapeutic response. Actas Dermosifiliogr.
- Ren Y, Niu W, Cao Y, Zhang Y, Hua J, Wang H. KRT6A Variant Underlies Pachyonychia Congenita: Insights Into Protein Aggregation and PPAR Signaling. Am J Med Genet A.
- Vu JT, Rivero ADL. Steatocystoma Multiplex Suppurativa-A Case Report and Review of Treatments. Australas J Dermatol.
- Pineda C, Cohen E, Su B, et al. A role for Keratin 17 in Rac1-mediated DNA damage response in keratinocytes. Mol Biol Cell. 2
- Brandt E, Heliö K, Harjama L, et al. DSP-palmoplantar epidermal differentiation disorder: a distinct phenotype and red flag for cardiomyopathy. Clin Exp Dermatol.
August Peer-to-Peer Fundraiser
This August, you can make a meaningful difference for individuals and families living with PC and related painful palmoplantar disorders by joining PC Project’s Peer-to-Peer Campaign.
All donations this month will be matched twice. That means $10 becomes $30, or $1,000 becomes $3,000.
We hope you will create your own fundraising page.
- Just go to the Step Up for PC page on our website to set up your own fundraiser.
- Share why you care.
Include your personal story. - Share your fundraising page.
Email it, text it, or post it on social media to your friends and family and invite them to give. - Simply donate for the double match.
Thanks for stepping up with us this month!
August is Make-A-Will Month
August is Make-a-Will Month which makes it a perfect time to think about the legacy you want to leave behind.
A will is more than a legal document. It’s a way to make your wishes clear, provide peace of mind for the people you love, and support the causes that matter most to you.
If PC Project has a special place in your heart, we hope you will consider including a gift to PC Project in your will. A planned gift of any size can help ensure that people living with PC and other painful pEDDs have access to the research, resources, and support they need for generations to come.
If you’ve already included PC Project in your will or estate plans, please let us know! We would love the opportunity to thank you for this meaningful gift and recognize you as part of our legacy community.
Your generosity today, and your vision for tomorrow, can help change lives for future generations of those who continue to be born with PC/pEDDs.
For more information about including PC Project in your will, click the link here.
Thank You, Jim: A True PC Warrior
After years of dedicated service, longtime Board member Jim Rittle is stepping down from the PC Project Board of Directors. While we’ll certainly miss his perspective around the Board table, we’re even more grateful for the countless ways he has inspired our community.
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