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Care 4 – Rare

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

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1️⃣ Rare w/in Rare, Worldwide
2️⃣ Not the Same Science
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- 💚 Medical Directory, Est. 2014
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The 95% to 97% zone
THE BLUEPRINT:
NORMAL VASCULAR ANATOMY

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We are not all the same
PORT WINE STAIN:
THE CELL THAT DIVIDED DIFFERENTLY

↓
We are not all the same
KLIPPEL-TRENAUNAY-WEBER:
ONE SYNDROME BECOMES THREE

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Not all Science is the Same
HAMBURG says . . .

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Needles in Haystacks
ISSVA says . . .

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Where did my diagnosis go?
WE TRY TO CLARIFY . . .

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Every which way
DYNAMIC LOOK-UPS

DIRECTORY [coming soon]

◈ SPECULATION (coming soon)

◈ SYMPTOMS (dynamic)

◈ SYNDROMES (dynamic)

◈ SPECIALTIES (dyanamic)

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Open hands, open hearts
SUPPORT GROUPS

DIRECTORY [coming soon]

. . . 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 ◈
Klippel-Trenauany-Weber Support Group - Public ◈
CMTC-OVM organisation - Public ◈
Klippel-Trenaunay Support Group - Membership (Website) ◈

Open Hearts:
72 Years Strong · 30 Diagnosed
ALWAYS
HERE FOR YOU

PATIENT
SYNTHESIZED

RARE
AMONG RARE

FOR MOMS & DADS/
US BORN RARE

© 2014 Care4-Rare,
All Rights Reserved.

Science:
Science is Global
HAMBURG: TYPES · FORMS

•

Science:
Mom | Dad | Us Born Rare
BORN RARE, TRANSLATED

•

•

Discernment:
Elegant Complexity Clarified
RARE W/IN RARE

•

Support:
Sharing is Love
VILLAGE: BORN RARE

by PROVIDER TYPE

•

by PRACTITIONER NAME

Support:
Finding Help:
UNITED STATES

Support:
Finding Help:
WORLD-WIDE

CURIOUS

CONTACT US

ADMIN ONLY

admin dasHboard

BLOG GRAND INDEX

NARRATIVES BY
MANAGEMENT CATEGORIES

IN [EX-AV-HB] · Arteriovenous Extratruncular Infiltrating
LI [EX-AV-HB] · Arteriovenous Extratruncular Limited
DE [TR-AV-HB] · Arteriovenous Truncular Deep AV Fistula
SU [TR-AV-HB] · Arteriovenous Truncular Superficial AV Fistula
HI [EX-A-CO-HB] · Combined Extratruncular Haemolymphatic Infiltrating
HL [EX-A-CO-HB] · Combined Extratruncular Haemolymphatic Limited
HA [TR-A-CO-HB] · Combined Truncular Haemolymphatic
IN [EX-LY-HB] · Lymphatic Extratruncular Infiltrating
LI [EX-LY-HB] · Lymphatic Extratruncular Limited
AP [TR-LY-HB] · Lymphatic Truncular Aplasia/ Hypoplasia/ Obstruction
DI [TR-LY-HB] · Lymphatic Truncular Dilation
IN [EX-VE-HB] · Venous Extratruncular Infiltrating
LI [EX-VE-HB] · Venous Extratruncular Limited
AP [TR-VE-HB] · Venous Truncular Aplasia Obstruction
DI [TR-VE-HB] · Venous Truncular Obstruction Dilation

NARRTIVES BY
DIAGNOSTIC
CLASSFICATIONS

[CL] Classifications and Branches/ Families
◈ AE [BE-NVT] · Acquired Elastotic Hemangioma
◈ AH [BE-NVT] · Anastomosing Hemangioma
◈ BA [BE-NVT] · Bacillary Angiomatosis
◈ CA [BE-NVT] · Cherry Angioma
◈ CH [BE-NVT] · Congenital Hemangioma
◈ CN [BE-NVT] · Cutaneous Epithelioid Angiomatous Nodule
◈ EC [BE-NVT] · Eccrine Angiomatous Hamartoma
◈ EH [BE-NVT] · Epithelioid Hemangioma
◈ GH [BE-NVT] · Glomeruloid Hemangioma
◈ AVF [IS-FF-SVM] · Arteriovenous Fistula
◈ AVM [IS-FF-SVM] · Arteriovenous Malformation
◈ AN [IS-LM-SF-SVM] · Angiokeratoma
◈ AN [MA-NVT] · Angiosarcoma
◈ EP [MA-NVT] · Epithelioid Hemangioendothelioma
◈ AO [NV-SVM] · Aorta
◈ AV [SY-LR-CM-SF-SVM] · CM-AVM 1 and 2
◈ AV [SY-TS-CM-SF-SVM] CM-AVM 1 and 2
[BE-NVT] Benign
[BO-NVT] Borderline
[BR-MU-VM-SF-SVM] BRBNS
[CM-MU-VM-SF-SVM] VMCM
◈ [GV-MU-VM-SF-SVM] GVM
◈ [HC-MU-VM-SF-SVM] HCCVM CCM
◈ CA [MU-FF-SVM] · CM-AVM 1 and 2
◈ CA [SY-FF-SVM] · CAMS
◈ CC [CM-SF-SVM] · Cutis Marmorata Telangiectatic Congenita
[GP-CM-SF-SVM] Geographic Pattern CM
[CC-CO-LM-SF-SVM] CCLA
◈ GD [CO-LM-SF-SVM] GLD
◈ GL [CO-LM-SF-SVM] GLA
◈ GS [CO-LM-SF-SVM] GSD
◈ CL [SY-CO-SF-SVM] CLAPO
◈ CV [SY-CO-SF-SVM] CLOVES
◈ CL [SY-GP-CM-SF-SVM] · Associated with CLOVES Disorders of PROS
◈ CL [SY-VM-SF-SVM] CLOVES
◈ CLM [IS-CO-SF-SVM] CLM
◈ CLV [IS-CO-SF-SVM] CLVM
◈ CVM [IS-CO-SF-SVM] CVM
◈ HCC [IS-CO-SF-SVM] HCCVM VVM
[CM-SF-SVM] Capillary Predominant
[CO-SF-SVM] Combined Slow-Flow
◈ CO [BO-NVT] · Composite Hemangioendothelioma
[CO-LM-SF-SVM] Complex
◈ DC [SY-RT-CM-SF-SVM] · DCMO
◈ DCM [SY-PW-CM-SF-SVM] · DCMO
◈ FA [IS-VM-SF-SVM] · FAVA
[FF-SVM] Fast-Flow (High Pressure · Low Resistance)
◈ HH [BE-NVT] · Hobnail Hemangioma
◈ IH [BE-NVT] · Infantile Hemangioma
◈ IP [BE-NVT] · Intravascular Papillary Endothelial Hyperplasia Masson Tumor
◈ LH [BE-NVT] · Littoral Cell Hemangioma of the Spleen
◈ MH [BE-NVT] · Microvenular Hemangioma
◈ PG [BE-NVT] · Pyogenic Granuloma Lobular Capillary Hemangioma
◈ PH [BE-NVT] · Papillary Hemangioma
◈ HJ [MU-FF-SVM] · HHT 1 and 2 JPHT
◈ PH [MU-FF-SVM] · PHTS
◈ HJ [SY-TS-CM-SF-SVM] HHT 1 and 2 and JPHT
◈ HYP [SY-PW-CM-SF-SVM] · With Hypertrophy or Extracutaneous Disease
◈ IN [IS-FF-SVM] · Intramuscular Fast-Flow Vascular Anomaly
◈ IS [CC-CO-LM-SF-SVM] · Isolated
[IS-CO-SF-SVM] Isolated
[IS-FF-SVM] Isolated
[MU-FF-SVM] Multifocal
◈ IS [GP-CM-SF-SVM] · Isolated
[IS-LM-SF-SVM] Isolated
[LY-LM-SF-SVM] Lymphedemas
◈ IS [LR-CM-SF-SVM] · Isolated
◈ IS [PR-LY-LM-SF-SVM] · Isolated
◈ IS [PW-CM-SF-SVM] · Isolated incl Phacomatosis Pigmentovascularis
◈ IS [RT-CM-SF-SVM] · Isolated
◈ IS [TS-CM-SF-SVM] Isolated
[IS-VM-SF-SVM] Isolated
[MU-VM-SF-SVM] Multifocal
◈ KH [BO-NVT] · Kaposiform Hemangioendothelioma
◈ KS [BO-NVT] · Kaposi Sarcoma
◈ ML [BO-NVT] · Multifocal Lymphangioendotheliomatosis with Thrombocytopenia MLT
◈ KL [CO-LM-SF-SVM] KLA
◈ KT [SY-CO-SF-SVM] KTS Klippel-Trenaunay Syndrome CLVM with hypertrophy
◈ KT [SY-GP-CM-SF-SVM] · Klippel-Trenaunay Syndrome
[LD-IS-LM-SF-SVM] LM Discrete
[LM-SF-SVM] Lymphatic Predominant
[LR-CM-SF-SVM] Low-Resistance CM with Faster Flow
◈ NS [CM-SF-SVM] · Nevus Simplex Salmon Patch
◈ LVM [IS-CO-SF-SVM] LVM
◈ MA [LD-IS-LM-SF-SVM] Macrocystic
◈ MI [LD-IS-LM-SF-SVM] Microcystic
◈ MX [LD-IS-LM-SF-SVM] Mixed Macromicrocystic
[MA-NVT] Malignant
◈ MC [SY-RT-CM-SF-SVM] M-CM
◈ MI [SY-RT-CM-SF-SVM] MIC-CAP
◈ MS [MU-VM-SF-SVM] · MSVM
◈ MS [SY-VM-SF-SVM] Maffucci Syndrome
[NV-SVM] Developmental Anomalies of Named Vessels
[NVT] Neoplastic Vascular Tumors
◈ OT [NV-SVM] · Other
◈ PH [VD-IS-VM-SF-SVM] Phlebectatic
◈ PH [SY-FF-SVM] · PHOST PHTS
◈ PH [SY-VM-SF-SVM] PHTS
◈ SP [SY-VM-SF-SVM] Sinus Pericranii
◈ PI [BO-NVT] · Papillary Intralymphatic Angioendothelioma PILA Dabska Tumor
◈ PO [BO-NVT] · Polymorphous Hemangioendothelioma
◈ PS [BO-NVT] · Pseudomyogenic Hemangioendothelioma
◈ RH [BO-NVT] · Retiform Hemangioendothelioma
◈ PL [BE-NVT] · Placental Chorioangioma
◈ RA [BE-NVT] · Reactive Angioendotheliomatosis
◈ SH [BE-NVT] · Spindle-Cell Hemangioma
◈ TA [BE-NVT] · Tufted Angioma
[PR-LY-LM-SF-SVM] Primary
SE [LY-LM-SF-SVM] · Secondary
◈ PR [SY-CO-SF-SVM] PROS PIK3CA-Related Overgrowth Spectrum
◈ PS [SY-CO-SF-SVM] Proteus Syndrome
[PUV] Potentially Unique Vascular Anomalies
[SVM] Structural Vascular Malformations
[PW-CM-SF-SVM] Port Wine CM Nevus Flammeus
[RT-CM-SF-SVM] Reticulate Telangiectatic CM
[TS-CM-SF-SVM] Telangiectasias and Spider Angiomas
◈ PW [SY-FF-SVM] · Parkes-Weber Syndrome
◈ SA [SY-FF-SVM] · SAMS
◈ PW [SY-LR-CM-SF-SVM] · Parkes-Weber Syndrome
[SF-SVM] Slow-Flow
◈ SP [VD-IS-VM-SF-SVM] · Spongiform
[VD-IS-VM-SF-SVM] VM Discrete
◈ SWS [SY-PW-CM-SF-SVM] · Sturge-Weber Syndrome
◈ SY [CC-CO-LM-SF-SVM] Syndromic RASopathy
[SY-CO-SF-SVM] Syndromic
[SY-FF-SVM] Syndromic
[SY-GP-CM-SF-SVM] Syndromic
[SY-LR-CM-SF-SVM] Syndromic
◈ SY [PR-LY-LM-SF-SVM] · Syndromic
[SY-PW-CM-SF-SVM] Syndromic
[SY-RT-CM-SF-SVM] Syndromic
[SY-TS-CM-SF-SVM] Syndromic
[SY-VM-SF-SVM] Syndromic
◈ VC [NV-SVM] · Vena Cava
◈ VG [NV-SVM] · Vein of Galen
[VM-SF-SVM] Venous Predominant
◈ [VO-MU-VM-SF-SVM] VMOS
◈ VV [IS-VM-SF-SVM] VVM

PRACTITONER
PROFILES
BY . . .

BY SYNDROME
BY SYMPTOMS
BY SPECIALTY
SN-Klippel-Trenaunay Syndrome KTS
SN-Maffucci Syndrome
SN-MCAP Syndrome
SN-Parkes-Weber Syndrome
SN-PHACES Syndrome
SN-PROS | PIK3CA-Related Overgrowth Spectrum
SN-Proteus Syndrome
SN-Sturge-Weber Syndrome SWS
SP-Cardiologist
SP-Dermatologist
SP-General Surgeon
SP-Geneticist
SP-Hematology Oncology
SP-Intervention Radiologist
SP-Lymphedema Specialist
SP-OB GYN
SP-Orthopedics
SP-Pediatric Surgery
SP-Pediatrician
SP-Plastic Surgeon
SP-Vascular Medicine
SP-Vascular Neurologist
SP-Vascular Surgeon
SP-Wound Care Specialist

PROVIDER
PROFILES
BY TYPE

EM-MEDICAL PROVIDER
EM-SPECIALTY CLINIC
EM-UNIVERSITY MEDICAL CENTER

PROVIDERS/
PRACTITIONERS
BY NAME

EP-PRACTITIONER (hierarchical)
EP-A-I
EP-A
EP-B
EP-C
EP-D
EP-E
EP-F
EP-G
EP-H
EP-I
EP-J-R
EP-J
EP-K
EP-L
EP-M
EP-N
EP-O
EP-P
EP-Q
EP-R
EP-S-Z
EP-S
EP-T
EP-U
EP-V
EP-W
EP-X
EP-Y
EP-Z

PROVIDERS/
PRACTITIOERS
BY GEOREGION

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