Rare Disease Day 2026

Rare Is Real. Rare Is Personal.

Every rare disease has a face.

For Pachyonychia Congenita (PC), one of those faces is Jack Padovano. Jack lives with PC every day — the pain, the workarounds, and the moments most people never see.

Rare Disease Day (February 28) is our chance to remind the world that rare does not mean invisible.

We invite our community—patients, families, clinicians, and researchers—to help us spread awareness in simple but powerful ways. Because awareness doesn’t start with statistics. It starts with people

Read Jack’s incredible story

Share YOUR Rare Disease Story in Simple Ways

Rare Disease Day isn’t just about telling one story — it’s about inviting others to share theirs.

Join our “Share Your Story” Challenge:

Share a photo or short message with your contacts.
Answer one prompt (like: What do you wish people understood about this particular rare disease?)
If you share on social media, tag @pachyonychia and use #RareDiseaseDay

Every message helps someone new discover PC or another painful palmoplantar keratoderma (PPK) — a patient who feels alone, a clinician who wants to learn, or a researcher who may one day make a breakthrough.

Complete this short survey to share your story with PC Project

Take One Action on February 28

On Rare Disease Day, people around the world are sharing stories, asking questions, and shining a light on conditions that are too often overlooked—including Pachyonychia Congenita

Do just one thing for Rare Disease Day:

Share a PC Project post with your contacts or on social media (See examples below.)
Share your own story and if it’s on social media, tag us @pachyonychia
Tell one person that PC and related PPKs exist
Donate to PC Project and turn awareness into action!

It may feel small. But for someone newly diagnosed — or someone still searching for answers — it can mean everything.