A personal beginning
Why Bare Your Rare exists
A rare diagnosis can isolate you. This is built to reverse that.
I'm one of two known people in Canada with Hajdu-Cheney Syndrome (HCS) — a rare genetic disorder caused by a NOTCH2 mutation that progressively breaks down bone and connective tissue. When I was a kid, doctors told my family I was one of three in the country. Now there are two of us. I grew up in northern Alberta in a time with no internet, no community(we were quite transient), and no way to find anyone else who understood what I was going through.
That's changed. I'm now connected to people around the world who live with HCS and other ultra-rare conditions. The tools available today — patient registries, shared databases, AI-powered research — would have been unimaginable when I was growing up in the Peace Country and bouncing between small towns across Alberta .
I built Bare Your Rare because I spent decades figuring things out alone, and nobody should have to. Not today with all the tech at our squishy fingertips. Whether you're a patient, a parent, a researcher, or just someone who cares — there's a place for you here. Your story is more valuable than you know.
Choose a path
Start where you are
Story, research, or practical tools — three ways into the same mission.
My Story
From growing up with an uncharted condition in rural Alberta to becoming a chef, a father of three, and a disability advocate — how HCS shaped everything.
Read moreAI & Rare Disease Research
New tools are helping tiny patient communities do what was once impossible — find patterns, speed up diagnosis, and drive real research breakthroughs.
Explore the researchResources
Patient registries, research organizations, diagnostic tools, and support networks — mapped out and compared so you know where to start.
Browse resourcesThe moment we're in
Why now
For ultra-rare conditions, modern tools aren't a nice-to-have — they're the path forward.
Rare diseases affect roughly 200-300 million people worldwide, but because each condition is rare on its own, research has historically been underfunded and scattered. Most people with ultra-rare conditions like HCS will never see a clinical trial designed for them. For decades, that meant waiting — and hoping someone in a lab somewhere was paying attention.
That's starting to shift. Patient-powered research networks are letting people contribute their own health data directly. Open registries are connecting patients across borders. AI tools are making it possible to find meaningful patterns in groups as small as a few dozen people. For conditions where there might be fewer than 100 known cases on earth, this isn't just promising — it's the only realistic path forward.
Your voice changes everything
Every rare story told
makes the next one less alone
You don't need a polished narrative. You just need to be real. Share your journey — the diagnosis, the detours, the moments no one talks about — and help someone else feel seen.
Share Your StoryAnonymous options available · Ultra-rare conditions represented