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Editor’s Compendium ↓
733 • Part 8 of 8 — the full map — 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 — Each one stands on its own, and together they tell the full story of why this map…
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YOU FOUND US ↓
269 • Part 1 of 8 — companion pieces forming a 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 a time — You are probably here because someone noticed a color on skin —…
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They look like us ↓
81 • Part 2 of 8 — a Care4-Rare guided introduction — It is one of the most natural things a parent does in the first days after a diagnosis — You go online — You find a support group, a Facebook page, a forum full of families navigating the same unfamiliar territory. You scroll…
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Many Distinct Causes of PWS ↓
234 • Part 3 of 8 — A patient-advocate companion guide to the graphic of the same title — Same surface appearance. Different vascular architecture. Different biology. Different treatment implications.
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We Are Not The Same ↓
537 • Part 4 0f 8 — a visual companion to Part 2: They Look Like Us — All of us look-a-likes are not the same — It is one of the most natural things a parent does in the first days after a diagnosis — You go online. You find a support group, a…
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One Syndrome is Three ↓
240 • Part 5 of 8 — a visual companion to Part 4: We Are Not The Same — This graphic lives in the sidebar as well, particularly useful when you are preparing questions for a specialist appointment — Once grouped as one. Now recognized as three distinct diagnoses based on flow type and vascular…
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A Specialists View Lens ↓
554 • Part 6 of 8 — in the Care4-Rare guided introduction — If you arrived here directly and haven’t seen the two patient- developed graphics yet, these “pictures are worth a thousand word” — borrowing that catch phrase — while coining our own “pictures that compel thousand word explanations” — What are medical specialists,…
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Before You Say Yes ↓
569 • Part 7 of 8 — in the Care4-Rare guided introduction — What are medical specialists, doctors and scientists, actually looking at/ for — When a vascular anomaly specialist orders an MRI, a Doppler ultrasound, a genetic panel, and a battery of follow-up studies, parents must feel sometimes as though the medical system has…
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Editor’s Compendium ↓
733 • Part 8 of 8 — the full map — 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 — Each one stands on its own, and together they tell the full story of why this map…