Welcome to Rare

In medical school, students are taught: “When you hear hoofbeats, think horses, not zebras.” Most of the time that’s good advice. But some of us are the zebra — which is why the zebra became the symbol of the rare disease community.

Why this blog

Rare diseases are individually rare and collectively common. Finding good information is hard, and finding people who get it is harder. This is my attempt to write down what I learn — the research, the appointments, the paperwork, the wins.

What you’ll find here

• Lived experience — what it’s actually like
• Research — papers and trials, explained in plain language
• Tips & how-tos — the practical stuff I wish someone had told me
• Resources — organizations and tools worth knowing about

Life is a lot. You don’t have to figure it all out alone.

Thanks for being here. 🦓