By Jack Padovano & Janice Schwartz
With the start of a new year, we reflect on the progress we’ve made together and share where we’re headed next.
Whether you live with PC or another PPK, are a family member, researcher, clinician, or one of our dedicated supporters, you are the heart of PC Project. Everything we do is guided by our mission: to support every person affected by these conditions, advance research toward meaningful treatments, and build a global community grounded in hope and understanding.
A Year of Momentum and Progress
This past year has been one of the most productive and forward-moving in PC Project’s history.
Expanding Global Outreach
PC Project represented the community at eight major scientific and medical conferences worldwide—raising awareness, strengthening collaborations, and helping clinicians better recognize and care for patients with PC and other PPKs.
Strengthening the Patient Registry
Our Patient Registry—the foundation of all PC/PPK research—surpassed 3,000 patients this past year. Every new registration strengthens the data that drives research and moves us closer to effective therapies.
Preparing for Clinical Trials
We devoted significant time to preparing for a clinical trial anticipated to begin this year. For rare diseases, reaching this stage is a milestone made possible by patient participation and sustained donor support.
A Record-Breaking Fundraising Effort
Last fall’s first peer-to-peer campaign became the largest in PC Project’s history, more than doubling its impact through matching support. Just as important, patients courageously shared their stories, helping others better understand life with PC/PPK.
Looking Toward Growth
This year, the Board formed a task force to explore expanding our mission to include all genetic palmoplantar keratoderma (PPK) conditions, now known as palmoplantar Epidermal Differentiation Disorders (pEDDs). Families affected by related disorders are increasingly reaching out for support, and we are thoughtfully exploring how we might serve this broader community while staying true to our mission.
Why This Work Matters
PC/PPK is not just a medical diagnosis—it affects nearly every aspect of daily life.
Many individuals live with chronic pain, difficulty walking, and limitations that affect work, school, and everyday activities. Others carry an emotional burden, feeling isolated, misunderstood, or unseen.
Time and again, patients tell us that finding PC Project was the first time they met someone else who truly understood their experience. That sense of connection matters.
Everything we do—research, genetic testing, patient support, education, advocacy—exists to reduce suffering and increase hope.
The Work Ahead
While we are proud of what we’ve accomplished, there is still much to do:
- Advancing the research pipeline
- Preparing for clinical trials
- Supporting thousands of patients worldwide
- Expanding clinician education and care
- Serving a larger community of related genetic skin disorders – all pEDDs
PC Project remains a small organization with a global mission. Progress in rare disease research does not happen through large commercial investment alone—it happens because of committed individuals who believe this work matters.
How You Can Support the Mission
As we move into the new year, your support makes a real difference.
If you are able, please consider making a one-time or setting up a monthly donation. Your gift directly fuels research, patient support, and progress toward treatments.
You can also help by:
- Sharing your story with friends and family
- Organizing a local fundraiser
- Encouraging others to join the registry
- Raising awareness through social media and your personal networks
Every action—every share, every dollar—moves this mission forward.
Thank You
Thank you to the patients who bravely share their journeys.
Thank you to the families who support your loved ones every day.
Thank you to the researchers and clinicians advancing rare disease science.
And thank you to our donors—your belief in this mission fuels everything we do.
Together, we are building a future where people living with PC—and all genetic pEDDs—have access to effective treatments, a supportive community, and lives defined by possibility rather than pain.
