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Care 4 – Rare

, living w/ Congenital Vascular Malformations [ Care4Rare.blog ]

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PATIENT SYNTHESIZED


. . . an information model for moms, dads, doctors, and those of us born rare, and living rare

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◈ Science:
We are not all the same
PORT-WINE STAINS THREE OF MANY

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◈ Syndromes:
We are not all the same
CONGENITAL VASCULAR MALFORMATION SPECTRUM

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◈ Support:
We are not all the same.
VASCULAR MALFORMATIONS COMPENDIUM

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◈ Support:
We are not all the Same
MASTER CLASSIFICATION CATALOG

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Master Classification Catalog

Support:
We are not all the same.
ANOMALIES BRIEF

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[ classification Matrix - Hamburg 2023 ] via radiopaedia.org

[ classification matrix - ISSVA current ] via ISSVA

[ classification matrix - ISSVA 2014 / 2018 historical ] via radiopaedia.org

[ glossary - ISSVA ] via ISSVA

Diagnosed:
We are not all the same:
SYMPTOMS & SYNDROMES


Klippel-Trenaunay Syndrome (KTS)

… a KT-Patient’s Personal Notebook which we reference when thinking about how much we have learned since being diagnosed with KT Syndrome.

Check back or subscribe for updates, as we transfer my personal notes into this digital archive.

This part of our journey begins now, it is conceptual.

*** Soon. This piece is not ready for publishing yet.

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[IS—GP—CM—SF—SVM]

ISOLATED —
GEOGRAPHIC PATTERN,
CAPILLARY ANOMALY,
SLOW-FLOW TYPE,
VASCULAR MALFORMATION



DEEP DIVES

[IS—GP—CM—SF—SVM]

◈ Legend


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OVERVIEW


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