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Vascular Birthmarks

Vascular Birthmarks

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

The Sturge-Weber Foundation

International network. Members in 50 states and internationally. Founded 1987. Mutual support network for families and professionals involved with Sturge-Weber syndrome, Port Wine birthmarks or Klippel Trenaunay syndrome. Disseminates information, funds and facilitates research. Newsletter, e-news monthly, phone support, bi-annual conference, pen pals and active e-mail support group. Educational materials for schools, parents and clinicians.
Write:
The Sturge-Weber Foundation
1240 Sussex Turnpike
Randolph, NJ 07869
Voice: 973-895-4445
Fax: 973-895-4846
Website: http://www.sturge-weber.org
E-Mail: ahoward@sturge-weber.org
Verified: 2/27/2014

Vascular Birthmark Foundation

National. Provides support via discussion boards - click on 'FORUMS'; click on RESOURCES then click on Support Groups and then Groups and Foundations. Also has downloadable resources, information and links to other resources.
Write:
VBF
PO Box 106
Latham, NY 12110
Voice: 1-877-823-4646
Website: http://www.birthmark.org
Verified: 3/5/2014

Klippel Trenaunay (KT) Support Group

National. Founded 1986. Provides support and education for individuals with Klippel Trenaunay, a combined vascular malformation, and their families.
Write:
K-T Support
1471 Greystone Lane
Milford, OH 45150
Website: http://k-t.org
Verified: 3/5/2014

AVM Survivors

Online. Provides support, information and network for individuals with Arteriovenous Malformation.
Website: http://www.avmsurvivors.org
E-Mail: info@bensfriends.org
Verified: 9/13/2013

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