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FOOTPRINTS
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Your eyes are starting to blur. You’ve been reading for a while now — port wine stains, flow types, laser biology, words you didn’t know this morning.
That’s the hard part. You did it.
You read about port wine stains not being one diagnosis — it’s a visible clue with at least three distinct biological causes underneath it.
You read the syndrome your child shares a name with might not be the syndrome they actually have — congenital vascular malformations are so often on a spectrum of syndromes, even a spectrum within syndromes. We witnesses science revise one classic syndrome becoming three.
You read what a specialist is really looking at when they order imaging. And you know what to ask before you say yes to a treatment plan.
What comes next is a little easier, because you’re not alone.
Over the past thirty years — and refined over the last several months — we built four tools so the next family and person born rare doesn’t have to start from zero the way we did.
It eases the human walk. Opens the door to four resources. — The bridge —
Hamburg Manual — not all science is the same. A second way of seeing the same information, organized by what the tissue is actually doing rather than what it’s called.
Classifications Catalog — finding needles in a haystack. The legend. If the Compendium is the map, this tells you how to read it.
Compendium — born rare, translated. Every classification we know of, organized in one place.
Medical Directory / Resource Guide — finding providers and practitioners who will investigate rather than assume.
Where do you go from here? Into the first of these four — the Hamburg Manual — the one that explains why doctors across the world might use different labels and words for the exact same thing.