The Vascular Birthmarks Foundation
Groups and Foundations
- About Face
- A support group for people with facial differences. Paul Onyx
is the group's Director.
- American Academy of Dermatology
- Write and request the "New Guidelines for Treating Hemangiomas."
The Academy maintains a comprehensive and informative website.
- Angioma Alliance.
Angioma Alliance seeks to improve the quality of life of individuals
with cavernous angiomas (clusters of abnormal blood vessels found
in the brain and spine). Also known as cerebral cavernous malformations,
cavernoma, and cavernous hemangioma.
- AVM Survivors
If you or a loved one has had an AVM, this AVM support group is for you. We are the AVM Survivors Network, here for your support.
- Association of Birth Defect Children
- A national clearinghouse to provide information about birth
defects. ABDC sponsors the National Birth Defect Registry, a
research and parent matching project.
- Information, recommendations, active interchange, and lots of resources
about port wine stains and hemangiomas. Oriented towards laser therapy.
Ongoing discussion with people from around the world by joining the
free private newsgroup or subscribing to their online newsletter.
Michael Steffano, the founder, has a facial birthmark.
- CMTC - Cutis
Marmorata Telangiectatica Congenita - an international organization
for people with the Van Lohuizen Syndrome (CMTC).
A.F.R. van der Heijden (Lex), PMP President. Organization for people with the ´Van Lohuizen syndrome´ (CMTC) website: www.cmtc.nl
3831 PC Leusden
- Nederlandse-Sturge-Weber-Vereniging (NSWV)
- Dutch Sturge-Weber Foundation Nederlandse-Sturge-Weber-Vereniging
- Faces - The
National Craniofacial Association assists children and adults who
have craniofacial disorders resulting from disease, accident, or birth.
FACES provides resource files of specialized craniofacial centers and other relevant resources; financial aid to those needing to travel away from home for medical assistance; quarterly newsletters providing human interest stories as well as the latest research and information on craniofacial disorders.
M-F 9:00 AM - 5:00 PM (EST)
Stephanie Hale, Program Director firstname.lastname@example.org
- HHT Foundation International, INC. - HHT (hereditary
hemorrhagic Telangiectatica- Osler-Weber-Rendu syndrome) is a rare
genetic blood vessel disorder. They provide referrals, support, information
and research data on this condition. They also can be reached at 1-800-HHT-NETW
- The Hemispherectomy Foundation
- Med Help International - Dedicated
to helping patients find the highest quality medical information in
the world today. They offer patients the tools necessary to make informed
treatment decisions within the short time lines dictated by their
illness or disease.
- National Organization For Rare Disorders,
INC. - An educational link for organizations and individuals
concerned with a rare disorder. They monitor legislation, research
diseases, award grants and network individuals.
- Nevus Network - The original
nevus group. Website has lots of medical references and info, as well
as posting past newsletters, and a contact address.
- Nevus Outreach - a non-profit organization
dedicated to education and research about giant nevi. Nevus Outreach
hosts bi-annual conferences for families, a toll-free 24-hour hot
line, and an online support group.
- Operation Smile This is the
website for Operation Smile a not-for profit international organization
that treats facial deformities. For more information contact Carla
Joyner at email@example.com.
The toll-free number for the Domestic Medical Program: 1-877-SMILE50.
- The Pediatric Glaucoma & Cataract Family Association
- The PGCFA is an international association dedicated to providing
education and resources to parents and professionals dealing with
the daily challenges of pediatric glaucoma and cataracts.
- Proteus Syndrome
Foundation - An Organization founded to educate, support,
and raise funding for grants and research toward the cure for Proteus
- Sturge-Weber Syndrome Community
- Provides informational resources and support for families affected
by SWS, which is typically a port wine stain birthmark that also has
brain involvement (which may result in seizures) and may have glaucoma
in one or both eyes.
- Twins with Birthmarks - Informational
resources and support to those families who have twins where one or
both is affected by birthmarks.
- VBF Europe
is a Branch of the Vascular Birthmarks Foundation. The organization
provides support and information to patients and families in Europe.
- VHL Family Alliance - Dedicated to improving the diagnosis, treatment, and quality of life for VHL (Von Hippel-Landau disease) patients and their families