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Hemangiomas Port Wine Stains Vascular Malformations

Discussion

VBF no longer maintains an active discussion forum. You may post questions and/or concerns on our VBF Facebook page. We are also providing a list of Facebook pages that may be appropriate for the vascular birthmark type that you or a loved one has been diagnosed with. There are many vascular birthmark groups on Facebook. The following are some examples but do not represent an exhausted list. You can google the name of the various vascular birthmarks/anomalies types and find many closed and open groups which encourage discussion. VBF also randomly monitors some groups to provide information to affected individuals and families.

The Vascular Birthmarks Foundation

https://www.facebook.com/VascularBirthmarksFoundation/?fref=ts

Hemangiomas

Hemangioma Parents Group

https://www.facebook.com/groups/3754730459/

Hemangioma Awareness

https://www.facebook.com/groups/354995278960/

Port Wine Stains

Birthmark: Port Wine Stain Family and Friends

https://www.facebook.com/groups/55234396639/

I Have or Know Someone with a Port Wine Stain

https://www.facebook.com/groups/307618847588/

Venous Malformations

Venous Malformation Vascular Malformation Support Group

https://www.facebook.com/groups/venousmalformation/

Venous Malformation (Closed Group)

https://www.facebook.com/groups/253196503124/

Arteriovenous Malformations

AVM (Arteriovenous Malformation) Awareness

https://www.facebook.com/groups/134820625466/

Arteriovenous Malformation (AVM)

https://www.facebook.com/groups/ArterialVenousMalformation/

Lymphatic Malformations

Lymphatic Malformations aka Lymphangioma, Cystic Hygroma

https://www.facebook.com/Lymphatic-Malformations-aka-Lymphangioma-Cystic-Hygroma-121936387825336/?fref=ts

Lymphatic Malformation Awareness

https://www.facebook.com/LMawareness/?fref=ts

PHACE Syndrome

PHACE Syndrome Community

https://www.facebook.com/groups/phacesyndromecommunity/

PHACE Syndrome Community Friends

https://www.facebook.com/PhaceSyndromeCommunityFriends/?fref=ts

Sturge Weber Syndrome

Sturge Weber Awareness

https://www.facebook.com/groups/65195578382/

Sturge Weber Syndrome Community

https://www.facebook.com/groups/69904455971/

Klippel Trenaunay Syndrome

Klippel Trenaunay Weber Syndrome (KTWS) Support Group

https://www.facebook.com/groups/64987887844/

Klippel Trenaunay (KTS) Discussion Group

https://www.facebook.com/groups/439395456085146/

CMTC Cutis Marmorata Telangiectasia Congenita

Cutis marmorata telangiectasia congenita

https://www.facebook.com/groups/172914172819753/

MLT/CVAT - Multifocal
Lymphangioendotheliomatosis with Thrombocytopenia

Parents and Loved ones of MLT/CVAT kids

https://www.facebook.com/groups/371378918500/

ASK THE VBF EXPERTS

Dr. Stuart Nelson
VBF Co-Medical Director
Diagnosis and treatment of Port Wine Stains

Dr. Robert Rosen
All non-brain AVMs and vascular lesions of the arms and legs

Dr. Roy Geronemus
Laser treatments

Dr. Milton Waner
Surgical treatment of hemangiomas, malformations and other vascular lesions

Dr. Aaron Fay
Surgical treatment of orbital birthmarks

Corinne Barinaga
VBF Family Services Director
Family advocacy, treatment questions, and physician referrals

Dr. Martin Mihm
VBF Co-Medical Director and Research Director
Research regarding vascular birthmarks and tumors

Dr. Darren Orbach
Pediatric Neurointerventiolanist for AVMs and PHACE

Dr. David Darrow
Hemangiomas and PWS for teeth / gums

Dr. Anne Comi
Sturge Weber Syndrome

Dr. Alex Berenstein
Interventional radiology

Dr. Kamiab Delfanian
KTS diagnosis and treatment

Dr. Joseph Edmonds
Surgical treatment of Lymphatic Malformations

Dr. Ana Duarte
Laser surgery and medical management of Infantile Hemangiomas and PWS

Dr. Orhan Konez
Reading and interpreting films and treating malformations with sclerotherapy or embollization

Dr. Steven Fishman
Liver and other internal vascular lesions

Dr. Gregory Levitin
Surgical treatment of all vascular birthmarks and tumors

Dr. Rafael Ortiz
Surgical treatment of tumors of the head and neck region, cerebral and spinal arteriovenous malformations, and treatment of craniofacial vascular lesions

Dr. Francine Blei
PHACE Syndrome

Dr. Calil, Lymphatic Malformation Surgeon
Lymphatic Malformations

Dr. Stavros Tombris (Europe)
Surgical treatment of hemangomas, port wine stains and malformations

Dr. Steven Kane
SWS Glaucoma Expert

Dr. Thomas Serena
Wound care

Dr. Helen Figge (Pharmacist)
Prescription drugs

Dr. Linda Rozell-Shannon
VBF President and Founder
World’s leading lay expert on the subject of vascular birthmarks

Lex Van der Heijden (CMTC Foundation)
Cutis marmorata telangiectatica congenita (CMTC)

Leslie Graff
East Coast Developmental Specialist
Trained developmental specialist

Elissa-Uretsky Rifkin, M.Ed. CMHC
Midwest Developmental Specialist
Trained developmental specialist

Eileen O'Connor (Peer Counseling)
Adult living with PWS

Sarina Patel (Peer Counseling)
Young adult advocate

Linda Seidel (Make-up Specialist)
Cosmetic coverage of birthmarks

Nancy Roberts (Make-up Specialist)
Cosmetic coverage of birthmarks
Co-Creator of Smart Cover Cosmetics (www.smartcover.com)

Alicita (Spanish Expert)
Spanish translator for interface with VBF experts

What Our Families Are Saying About Us
I know a lot of your work is to help children with vascular birthmarks,
and I am so glad you do that. But you also helped me in a big way when I was
in my 40's, and now again at the age of 60. [read more]

Mission Statement: An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance for individuals with birthmarks.

Here you will find information and resources for patients and families affected by hemangioma, port wine stain, arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark and syndrome.

Social media links: https://www.facebook.com/VascularBirthmarksFoundation https://twitter.com/VBirthmarks https://www.instagram.com/vbirthmarks/ https://www.youtube.com/user/VBFchannel?feature=watch

Translations of the VBF website: Español | Deutsch | Français | Italiano | Português

DISCLAIMER
Information accessed through the VBF is presented in summary form in order to impart general information relating to the diagnosis and treatment of vascular birthmarks. Such information is not complete and should not be used as a substitute for a consultation or visit with your physician or other health care provider. Information accessed through VBF is not exhaustive and does not cover every aspect of vascular birthmarks. VBF makes no warranty as to the information's completeness, reliability or accuracy. Should you have any health care related questions regarding this matter, please see your physician or other health care provider promptly. Information accessed through the VBF is provided "AS IS" and without warranty, express or implied. All implied warranties of merchantability and fitness for a particular use or purpose are hereby excluded. VBF shall not be liable under any theory or indemnity. In no event shall VBF be liable for any damages, direct or indirect, and all other damages, direct or indirect, special, incidental, consequential or punitive, are hereby excluded even if VBF has been advised of the possibility of such damages.

| Administrative | Staff E-mail |

Dr. Linda Rozell-Shannon (PhD), President and Founder
Vascular Birthmarks Foundation, PO Box 106, Latham, NY 12110
Federal Tax ID 16-1515227

Site Design and Maintenance performed by M. Scott.

Copyright © 1994 - 2018, Dr. Linda Rozell-Shannon. All Rights Reserved.