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:
    Bitterschoten 15
    3831 PC Leusden
    The Netherlands

  • Nederlandse-Sturge-Weber-Vereniging (NSWV) - Dutch Sturge-Weber Foundation Nederlandse-Sturge-Weber-Vereniging (NSWV)

  • 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

  • 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 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 syndrome.

  • 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