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Care 4 – Rare

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

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🌍 Worldwide Frameworks
- → HAMBURG GRAPHIC
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α FORM · TYPE CATEGORIES
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↓
The 95% to 97% zone
The Blueprint
VASCULAR ANATOMY

↓
As-Builts
Port Wine Stains
THREE OF MANY CAUSES

↓
As-Builts
Klippel-Trenaunay-Weber
ONE BECOMES THREE

TWO CONCEPTUAL
FRAMEWORKS

RAW LINKS

◅ HAMBURG –
INTERNATIONAL WORKSHOP
ON VASCULAR
MALFORMATIONS
◅ ISSVA – INTERNATIONAL
SOCIETY for the
STUDY OF VASCULAR
ANOMALIES

CARE4-RARE • AT A GLANCE

28 FORM-TYPE
CATEGORIES

Including 5 vessel-combined types — the post-1992 evolution added to Hamburg's original six-branch foundation.

6 VESSEL TYPES • EMBRYOLOGICAL ORIGIN

28 FORM-TYPE CATEGORIES

CATALOG DIRECTORY NAVIGATION

◅ BY PROVIDER ◅ BY PRACTITIONER ◅ CLINIC CENTERS ◅ SPECIALISTS ◅ FULL INDEX ◅ REGION MAP

CARE4-RARE • AT A GLANCE

100 CLINICAL
CLASSIFICATIONS

Clinical presentations with underlying genetic, histological, and hemodynamic diagnostic profiles.

2 BIOLOGICAL TYPES • CELLULAR BEHAVIOR

100 CLINICAL CLASSIFICATIONS

PHENOTYPIC TO MOLECULAR COMPENDIUM

A comprehensive repository of 100 diagnostic profiles, linking observable clinical manifestations to structural pathophysiologic mechanisms.

This index provides standardized criteria to assist both patients and clinicians in navigating overlapping diagnostic spectrums.

◅ LIVE REPORT ◅ DIRECTORY REPORT

CARE4-RARE • AT A GLANCE

10 NOSOLOGICAL
DOMAINS

Re-integrating clinical diagnosis wherein practicing physicians continue to assign classifications that Associations no longer present within their frameworks.

PATIENT SCHOLARSHIP & CLINICAL TOTALITY

10 SYSTEMIC DOMAINS

HOLISTIC PATIENT & BODY SYSTEM MAPS

The 10 Domains capture systemic manifestations that extend beyond primary vascular architecture into surrounding tissue, skeletal structure, and organ systems.

Restoring these essential clinical domains ensures multi-system manifestations are fully accounted for in patient care planning.

◅ LIVE REPORT ◅ DIRECTORY REPORT

◅ Proposal Metrics

CARE4-RARE • AT A GLANCE

110 SYNTHESIZED
REALITIES
P·2·P

100 Classifications + 10 Domains indexed to the real world of bedside medicine — where clinical practice meets the lived rare experience.

PATIENT SCHOLARSHIP & CLINICAL TOTALITY

110 SYNTHESIZED REALITIES

RELATIVE COMPLEXITY INDEX & NUMERICAL TOTALITY

The 110 stat target represents the complete synthesis of our 100 diagnostic Classifications and 10 Systemic Domains, indexed directly against bedside clinical reality.

This framework measures multi-system diagnostic overlap to ensure lived patient experience aligns with modern molecular medicine.

◅ LIVE REPORT ◅ DIRECTORY

CARE4-RARE • AT A GLANCE

500+ SPECIALIST
RESOURCES

Real-time indexing of specialized multidisciplinary teams, clinical centers, and individual rare disease practitioners.

COMMUNITY BUILT MEDICAL DIRECTORY

SPECIALIST DIRECTORY INDEX

REAL-TIME CLINICAL RESOURCE LOOKUPS

Real-time database lookups locating expert clinical resources, specialized treatment centers, and vascular anomaly practitioners.

Filter by organizational provider type or navigate individual practitioners alphabetically to access confirmed rare disease care networks.

◅ BY PROVIDER ◅ BY PRACTITIONER ◅ SPECIALISTS ◅ SYMPTOMS ◅ WORLD MAP ◅ USA MAP

GRAND RESOURCE DIRECTORY

Our Grand Resource Directory is under construction. Please bear with us.

Meanwhile, here are the support groups I am directly familiar with:

Care4-Rare - Open Website, us here ◅ List
Klippel-Trenaunay-Weber Support Group - Public ◅ List
CMTC-OVM organisation - Public ◅ List
Klippel-Trenaunay Support Group - Membership (Website) ◅ List

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↓
71 Years Strong
53 Years Together
30 YEARS DIAGNOSED

RARE
AMONG RARE

FOR MOMS & DADS/
US BORN RARE

© 2014–2026 Dawne L & Willi A / Care4-Rare,
a Lee Family Project. All rights reserved.
Multilayered usage permissions.

STAY CONNECTED

Join our rare community space or follow personal reflections and clinical classification insights.

UNDER THE STARS (learn more)

Community front porch conversations—free of algorithms, paywalls, and social noise.

THE NOTEBOOK (learn more)

Periodic reflections and updates on Congenital Vascular Diagnostic Classifications.

SUBSCRIBE & JOIN

Under the Stars • Our Rare Community

This is our dedicated, noise-free community front porch—a space born out of fatigue from chasing fragmented conversations on algorithm-driven social media platforms. Here, families, individuals born rare, and advocates gather directly to converse, support, and share experiences on our own open terms. No algorithms, no corporate wall, no paywalls.

The Notebook • Updates & Classification Insights

Subscribing to the Notebook delivers periodic personal reflections and blog updates directly to your inbox. Beyond regular posts, it serves as a hand up for families and clinicians seeking an accessible, centralized repository for technical information on Congenital Vascular Diagnostic Classifications, Management Categories, Relative Complexities, and Inter-Domains.

BRIDGE TO OUR
RESOURCE TOOLS

NEEDLES IN A HAYSTACK

◅ HAMBURG TO ISSVA –
X-REF — MANAGEMENT
CATEGORIES TO DIAGNOSTIC
CLASSIFICATIONS
◅ ISSVA TO HAMBURG –
X-REF — DIAGNOSTIC
CLASSIFICATIONS TO
MANAGEMENT CATEGORIES

◅ Catalog Versions

CARE4-RARE • BOOK

HAMBURG-inspired FRAMEWORK

VASCULAR MALFORMATIONS

FORM-TYPE
CATEGORIES

“Why does mine keep coming back?” Truncular or extratruncular — the answer is biology, not treatment failure.

6 VESSEL TYPES · 28 FORM-TYPE CATEGORIES · EXPLORER NAVIGABLE · CARE4-RARE

World of Science

Mom · Dad · Us Born Rare

BORN RARE, TRANSLATED

FORM-TYPE CATEGORIES

CATALOG BOOK OVERVIEW

The 28 Form-Type Categories represent the post-1992 evolution of vascular malformation classification.

◅ FULL ◅ MINI

◅ Compendium Versions

CARE4-RARE • BOOK

ISSVA-inspired FRAMEWORK

VASCULAR ANOMALIES

CLINICAL
CLASSIFICATIONS

Connecting clinical observations with structural pathophysiologic mechanisms across rare conditions.

100 SYNTHESES · MOLECULAR MAPS · CARE4-RARE

World of Science

Mom · Dad · Us Born Rare

BORN RARE, TRANSLATED

CLINICAL CLASSIFICATIONS

COMPENDIUM BOOK OVERVIEW

A repository linking clinical manifestations to structural pathophysiologic mechanisms.

◅ FULL ◅ MINI

◅ Atlas Versions

CARE4-RARE • BOOK

PATIENT-Synthesized FRAMEWORK

VASCULAR MALFORMATIONS

NOSOLOGICAL
DOMAINS

Connecting those who discover their diagnosis has changed names seemingly overnight.

10 SYNTHESES · CROSS-MATCH MAPS · CARE4-RARE

World of Science

Mom · Dad · Us Born Rare

BORN RARE, TRANSLATED

DOMAINS

ATLAS BOOK OVERVIEW

Connecting those who discover their diagnosis has changed names seemingly overnight.

◅ FULL ◅ MINI

◅ Proposal Versions

CARE4-RARE • BOOK

PATIENT-synthesized FRAMEWORK

SYNTHESIZED REALITIES

PHENOTYPE TO
PATHOPHYSIOLOGY

Bridging diagnostic taxonomy with lived patient experience—where bedside clinical reality meets molecular science.

110 REALITIES · 100 DIAGNOSES + 10 DOMAINS · CARE4-RARE

World of Experience

Advocates · Researchers · Caregivers

FILLING IN THE GAPS

P2P PROPOSAL

PROPOSAL BOOK OVERVIEW

The complete synthesis of 100 diagnostic Classifications and 10 Domains, indexed directly against bedside clinical reality.

◅ FULL ◅ MINI

◅ Directory Versions

CARE4-RARE • BOOK

CLINICAL NETWORK DIRECTORY

SPECIALIST RESOURCES

PROVIDERS &
PRACTITIONERS

Locating multidisciplinary care centers, expert practitioners, and specialized vascular anomaly teams worldwide.

500+ RESOURCES · REAL-TIME LOOKUPS · CARE4-RARE

World of Practice

Patients · Navigators · Families

CONNECTING CARE

CLINICAL NETWORK DIRECTORY

DIRECTORY BOOK OVERVIEW

Real-time indexing of specialized multidisciplinary teams, clinical centers, and individual rare disease practitioners.

◅ BY PROVIDER ◅ BY PRACTITIONER

↓
Finding Help:
Geo-Regions
UNITED STATES

↓
Finding Help:
Geo-Regions
WORLD-WIDE

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📁 DISCRETE LM [LD-IS-LM-SF-SVM]

DISCRETE —
ISOLATED,
LYMPHATIC ANOMALY,
SLOW-FLOW,
VACULAR MALFORMATION

Search

DEEP DIVES

📁 DISCRETE LM [LD-IS-LM-SF-SVM]

◈ Legend

OVERVIEW

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: 📁 DISCRETE LM [LD-IS-LM-SF-SVM]

📁 TABLE OF CONTENTS: CLINICAL CLASSIFICATIONS

                        
                            MATRIX LEGEND: [C] Capillary | [L] Lymphatic | [V] Venous | [A] Arterial | [O] Overgrowth | [U] Undergrowth ↗

📁 🔰 CLINICAL CLASSIFACTIONS LIBRARY

📁 📚 navigate: CLINICAL CLASSIFICATIONS

📁 📁 STRUCTURED VASCULAR MALFORMATIONS [SVM]

📁 | a | Vascular Malformations Explained

📁 | b | Vascular Malformations Explained

📁 📁 SLOW FLOW TYPE [SF-SVM]

📁 📂 CAPILLARY — PREDOMINANT [CM-SF-SVM]

📍 📍 Nevus simplex, Salmon Patch · NS [CM-SF-SVM]

14.01.01.01.01

📁 📂 PORT WINE STAIN [PW-CM-SF-SVM]

📁 📍 Port Wine CM - Isolated · IS [PW-CM-SF-SVM]

📁 📂 Syndromic [SY-PW-CM-SF-SVM]

📍 📍 w/ Hypertrophy · HYP [SY—PW—CM—SF—SVM]

14.01.01.01.02.02.01

📍 📍 Sturge-Weber Syndrome · SWS [PW-CM-SF-SVM]

14.01.01.01.02.02.02

📍 📍 Diffuse CM w/ Overgrowth · DCMO [SY—PW—CM—SF—SVM]

14.01.01.01.02.02.03

📁 📂 RETICULATE/ TELANGIECTATIC [RT-CM-SF-SVM]

📍 📍 Nevus simplex, Salmon Patch · IS [RT-CM-SF-SVM]

14.01.01.01.03.01

📁 📂 [SY-RT-CM-SF-SVM]

📍 📍 Macrocephaly-CM Syndrome · MC [SY-RT-CM-SF-SVM]

14.01.01.01.03.02.01

📁 📍 Microcephaly-CM Syndrome · MI [SY-RT-CM-SF-SVM]

📍 📍Diffuse CM w/ Overgrowth · DC [SY-RT-CM-SF-SVM]

14.01.01.01.03.02.03

📁 📂 Geographic Pattern CM [GP-CM-SF-SVM]

📍 📍 IS [GP-CM-SF-SVM]

14.01.01.01.04.01

📁 📂 Syndromic [SY-GP-CM-SF-SVM]

📁 📍 Klippel-Trenaunay Syndrome · KT [SY-GP-M-SF-SVM]

📁 📍 CLOVES / Disorders of PROS · CL [SY-GP-CM-SF-SVM]

📁 📂 Low-resistance CM / faster flow · [LR—CM—SF—SVM]

📁 📍 Isolated · IS [LR-CM-SF-SVM]

📁 📂 Syndromic [SY—LR—CM—SF—SVM]

📁 📍 CM-AVM 1 and 2 · AV [SY-LR-CM-SF-SVM]

📁 📍 Parkes-Weber Syndrome · PW [SY-LR-CM-SF-SVM]

📁 📂 Telangiectasias & Spider Angiomas [TS—CM—SF—SVM]

📍 📍Isolated · IS [TS-CM-SF-SVM]

14.01.01.01.06.01

📁 📂 Syndromic [SY-TS-CM-SF-SVM]

📍 📍CM-AVM 1 and 2 · AV [SY-TS-CM-SF-SVM]

14.01.01.01.06.02.01

📍 📍 HHT 1 & 2 ; and JPHT · HJ [SY-TS-CM-SF-SVM]

14.01.01.01.06.02.02

📁 📁 LYMPHATIC — PREDOMINANT [LM-SF-SVM]

📁 📁 ISOLATED [IS-LM-SF-SVM]

📁 📁 DISCRETE LM [LD-IS-LM-SF-SVM] Reading Now

📍 📍 Macrocystic · MA [LD-IS-LM-SF-SVM]

14.01.01.02.01.01.01

📍 📍 Microcystic · MI [LD-IS-LM-SF-VM]

14.01.01.02.01.01.02

📍 📍 Mixed Macromicrocystic · MX [LD-IS-LM-SF-SVM]

14.01.01.02.01.01.03

📁 📍Angiokeratoma · AN [IS-LM-SF-SVM]

14.01.01.02.02

📍 📜 Vignette Builder → AN [IS-LM-SF-SVM]

📁 📁 COMPLEX [CO-LM-SF-SVM]

📍 📍 GLA: Generalized Lymphatic Anomaly · GL [CO-LM-SF-SVM]

14.01.01.02.03.01

📍 📍 KLA: Kaposiform Lymphangiomatosis · KL [CO-LM-F-SVM]

14.01.01.02.03.02

📍 📍 GSD: Gorham-Stout disease · GS [CO-LM-SF-SVM]

14.01.01.02.03.03

📍 📍 GLD: Generalized Lymphatic Dysplasia · GD [CO-LM-SF-SVM]

14.01.01.02.03.04

📁 📁 CCLA: CENTRAL CONDUCTING LYMPHATIC ANOMALY [CC-CO-LM-SF-SVM]

📍 📍 Isolated · IS [CC-CO-LM-SF-SVM]

14.01.01.02.03.05.01

📍 📍 Syndromic · SY [CC-CO-LM-SF-SVM]

14.01.01.02.03.05.02

📁 📁 LYMPHEDEMAS [LY-LM-SF-SVM]

📁 📁 PRIMARY PR-LY-LM-SF-SVM]

📍 📍 Isolated · IS [PR-LY-LM-SF-SVM]

14.01.01.02.04.01.01

📁 📍 Syndromic · SY [PR-LY-LM-SF-SVM]

📁 📍 Secondary · SE [LY-LM-SF-SVM]

📁 📁 VENOUS — PREDOMINANT [VM-SF-SVM]

📁 📁 ISOLATED [IS-VM-SF-SVM]

📁 📁 DIRECT: VESSEL-BOUND MASS [VD—IS—VM—SF—SVM]

📍 📍 Phlebectatic, wide, ectatic, or dilated venous channels · PH [IS-VM-SF-SVM]

14.01.01.03.01.01.01

📍 📍 Spongiform, venous micro-cavities, small fibrous walls · [SP-IS-VM-SF-SVM]

14.01.01.03.01.01.02

📍 📍 VVM: Skin-Infiltrating Masses · [VV—IS—VM—SF—SVM]

14.01.01.03.01.02

📍 📍FAVA: Muscle-Infiltrating Masses · FA [IS-VM-SF-SVM]

14.01.01.03.01.03

📁 📁 MULTIFOCAL [MU-VM-SF-SVM]

📁 📁 SYNDROMIC [SY-VM-SF-SVM]

📍 📍 PHTS · PH [SY-VM-SF-SVM]

14.01.01.03.03.01

📍 📍 CLOVES · CL [SY-VM-SF-SVM]

14.01.01.03.03.02

📍 📍 Mafucci Syndrome · MS [SY-VM-SF-SVM]

14.01.01.03.03.03

📍 📍 Sinus Pericranii · SP [SY-VM-SF-SVM]

14.01.01.03.03.04

📁 📁 MIXED — COMBINED [CO-SF-SVM]

📁 📁 ISOLATED [IS-CO-SF-VM]

📍 📍 CLVM: Capillary, Lymphatic, & Vascular Malformations · CLV [IS-CO-SF-SVM]

14.01.01.04.01.01

📍 📍 LVM: Lymphatic & Venous Malformations · LV [IS-CO-SF-SVM]

14.01.01.04.01.02

📍 📍 CLM: Capillary & Lymphatic Malformations · CL [IS-CO-SF-SVM]

14.01.01.04.01.03

📍 📍 CVM: Capillary & Venous Malformations · CV [IS-CO-SF-SVM]

14.01.01.04.01.04

📍 📍 HCCVM/ VVM: Hyperkeratotic Cutaneous Capillary-Venous Malformation · HCC [IS-CO-SF-SVM]

14.01.01.04.01.05

📁 📁 SYNDROMIC [SY-CO-SF-SVM]

📍 📍 PROS: CLVM, w/ Mosaic Cellular Overgrowth - genetic diagnosis · PR [SY-CO-SF-SVM]

14.01.01.04.02.01

📍 📍 KTS: CLVM, w/ Asymmetrical Limb Hypertrophy · KT [SY-CO-SF-SVM]

14.01.01.04.02.02

📍 📍 CLOVES: CLVM, w/ Segmental Lipomatous Truncal Overgrowth, Epidermal Nevi, & Spinal Anomalies · CV [SY-CO-SF-SVM]

14.01.01.04.02.03

📍 📍 CLAPO: CLVM, w/ Cervicofacial Soft Tissue & Late-Onset Skeletal Hypertrophy · CL [SY-CO-SF-SVM]

14.01.01.04.02.04

📍 📍PROTEUS: CLVM, w/ Asymmetric Disproportionate Hyperostosis, Cerebriform Nevi, & Adipose Dysregulation · PS [SY-CO-SF-SVM]

14.01.01.04.02.05

📁 📁 FAST FLOW TYPE [FF-SVM]

📁 📁 ISOLATED [IS-FF-SVM]

📍 📍 AVM: · AM [IS-FF-SVM]

14.01.02.01.01

📍 📍 Intramuscular Fast-flow Vascular Anomaly · IN [IS-FF-SVM]

14.01.02.01.02

📍 📍 AVF · AF [IS-FF-SVM]

14.01.02.01.03

📁 📁 MULTIFOCAL [MU-FF-SVM]

📁 📁 SYNDROMIC [SY-FF-SVM]

📁 📁 [NV—SVM]

📁 📁 [NVT]

📁 📁 [PUV]

📁 CLASSIFICATION VIEW/EDIT TEST

📁 CLASSIFICATION REGISTRY: ARCHITECTURE PLAN & SYSTEM BLUEPRINT

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