For every child Born Rare whose parents met them without the benefit of medical understandings of Congenital Vascular Anomalies.
… a collective 30-year effort to find resources for those born rare, those seeking diagnosis, prescription, support, prognosis, knowledge and/or guidance.
SPOTLIGHT
YOU FOUND US →
← ◈ Home They Look Like Us ◈ → Welcome. You found this website for a reason. This is the first of eight companion pieces that together form the guided introduction to this website. Read in any order — each piece stands on its own. Or follow the sequence: it builds deliberately, one page at… Continue reading YOU FOUND US →
They look like us. →
← ◈ You Found Us We Are Not The Same ◈ → “They look like us.” Part 2 of 8 in the Care4-Rare guided introduction. What “different biology underneath” looks like — the same surface, three different vascular architectures — Three Distinct Causes of a Port Wine Stain ◈ → It is also in the… Continue reading They look like us. →
Three of Many Distinct Causes of PWS →
A patient-advocate companion guide to the graphic of the same title. Same surface appearance. Different vascular architecture. Different biology. Different treatment implications. [ FULL GRAPHIC ] Before You Read I was born with a port wine stain covering both legs and most of my trunk — from hip to toe. For more than forty years,… Continue reading Three of Many Distinct Causes of PWS →
We Are Not The Same →
← ◈ They Look Like Us We Are Not The Syndrome ◈ → We are not the same. Part 3 of 8 — a visual companion to Part 2: They Look Like Us. [ ← They Look Like Us ] [ We Are Not The Same → ] This graphic lives in the sidebar… Continue reading We Are Not The Same →
Three Confounded Syndromes.
Three Confounded Syndromes. Part 5 of 8 — a visual companion to Part 4: We Are Not The Same. [ ← We Are Not The Same ] [ What the Specialists Are Actually Looking At → ] This graphic lives in the sidebar as well — particularly useful when you are preparing questions for… Continue reading Three Confounded Syndromes.
What the Specialists Are Actually Looking At →
What the specialists are actually looking at. Part 6 of 8 in the Care4-Rare guided introduction. [ ← Three Confounded Syndromes ] [ Before You Say Yes → ] If you arrived here directly and haven’t seen the two patient- developed graphics yet, they are in the sidebar — they show visually what this… Continue reading What the Specialists Are Actually Looking At →
Before You Say Yes →
Before you say yes. Part 7 of 8 in the Care4-Rare guided introduction. [ ← What the Specialists Are Actually Looking At ] [ Vascular Anomalies Compendium → ] The full clinical detail behind the treatment questions raised in this post lives in the Vascular Anomalies Compendium — the complete map of every condition… Continue reading Before You Say Yes →
Vascular Anomalies Compendium
An adaptation by the Care4-Rare Project You have made it to the map. Part 8 of 8 — the full map. [ ← Before You Say Yes ] You have made it to the map. If you arrived here directly, the seven companion pieces in this guided introduction are available from the Blog page —… Continue reading Vascular Anomalies Compendium
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Care 4 - Rare 