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FOOTPRINTS
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Click the wrong link on a medical site, and you land on a page full of medical jargon in Latin that you didn’t sign up for.
Ours doesn’t work that way, on purpose. And this note itself is half the one thousand words I warned needed to explain congenital vascular malformations.
If these ten previous notes confirm anything, it’s this: what you see on the skin and what’s happening underneath are not always the same story.
Our Compendium is where we work to put the whole story in one place. Call it Born Rare, Translated.
Good interviewers reveal their subject to the audience. Great interviewers reveal their subject to themselves
— James Lipton —
Wow. Now that’s an unexpected turn in a conversation about biology, medicine, genetics. Lipton was an amazing interviewer, not a doctor or born rare, who made difficult interviews look easy. When we thought about how to best present difficult information, the success Lipton had came to mind. I had a dream, a real doozy of a night dream. What if I could interview every provider and practitioner who had experience in vascular diagnoses and treating malformations.
That dream blossomed into a rhetorical questionnaire that we used as a template for documenting 103 diagnostic Classifications, every Provider and Practitioner we could find. I hope you find our approach interesting and helpful.
Our avenue, our resource that each of us has due to modern medicine and technology. The significant evolution that escaped my mom and dad’s reach. Nearly mine too, a child of green screens, IBM mainframe computers, first-generation Personal Computers, one-line string searches, local libraries, and paper medical journals.
Thankfully, our world today is a public record treasure trove. My father, a treasure himself, was a lifetime learner and medical-biology geek who encouraged me as a layman to think beyond the outer edges of what we knew. His daily world was medical pioneers who pushed the limits of our knowledge every day. His motivation was not just me; he lost a son at 3 years old, my brother, to open-heart surgery in 1963. Yet, he did not blame science or medicine. He pushed us to engage, to learn, to be pioneers ourselves.
So today, our Compendium is organized the way clinicians organize it — by structure, then by flow, then by type — but every entry carries something most classification documents don’t: a direct link to a page that explains it in plain language.
That link is the ◈ symbol. Wherever you see it next to a name, click it. It takes you to that condition’s own page — what it looks like, what it feels like, what else might be present, and what the medical literature actually says, written so you don’t need a medical degree to follow it.
Each entry also carries two codes, separated by that same ◈. The one on the left is ours — the Care4-Rare Alpha Catalog. The one on the right is the Hamburg Classification, which Note 9 introduced. Having both means you can speak to a Hamburg-trained specialist and an ISSVA-trained specialist using the same document.
You don’t need to memorize any of this. Just know it exists, and that when you find what might be your child’s diagnosis on this page, there’s more waiting behind that ◈. The magic diamond that is our standard navigation link that jumps you from one interesting page to another.