Support Groups

• 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.
  
  
• Les Anomalies Vasculaires - Launching the first Web site in French on vascular birthmarks. It gives information on vascular birthmarks and provides an opportunity for joining a French-speaking support group.
  
  
• 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.
  
  
• 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.
  
  
• Because I Care Foundation - A support group for parents, children, and adults who are affected by the various birthmark-related conditions listed on our site as well as providing financial assistance for medical needs related to the person's condition or assistance in paying for travel expenses necessary to treat the person's condition.
  
  
• Birthmarks.com - 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.
  
  
• Birthmarks and Hemangiomas InterNETwork Support - Internet Web pages offering support, resources, and information on medical treatment for birthmarks and hemangiomas. Founded by Michelle Greco, this site contains a support group of families, references and information.
  
  
• Children Anguished with Lymphatic Malformations - A nonprofit organization helping children born with lymphatic abnormalities.
  
  
• 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
  Bitterschoten 15
  3831 PC Leusden
  The Netherlands
  e-mail: afr.vd.heijden@hccnet.nl
  
  
• CMTC At VBF - Our discussion forum. Jinny Wylie of South Carolina will be monitoring the CMTC (Cutis Marmorata Telangiectatica Congenita) discussion forum. Jinny's son Austin is suspected of having CMTC although no definitive diagnosis has been given.
  
  
• 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 stephanie@faces-cranio.org
  www.faces-crnaio.org
  800.332.2373
  
  
• Family Village - A global community of disability related resources.
  
  
• Forward Face - A national non-profit organization for patients and families with craniofacial disorders.
  
  
• 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
  
  
• Hemangioma Hope - A compassionate prayer ministry for families affected by hemangiomas. Founded by Cindy Dougan, this organization provides information and publishes a newsletter. They also host an annual conference and picnic for families and physicians.
  
  
• Birthmarks and Hemangiomas - Support group for birthmarks, hemangiomas, and vascular malformations at iVillage Message Boards.
  
  
• K-T Foundation - Provides informational resources and support for families affected by K-T, which is typically a birthmark covering legs, arms, and the trunk area and may have some tissue and/or muscle involvement.
  
  
• Let's Face It - An informational and support network for people with facial differences, their families, friends and professionals. They publish an excellent resource book, "Resources for People with Facial Difference."
  
  
• Lymphovenous Canada - This site is a link for people in Canada with dysfunctioning lymphatic systems to health care professionals and support groups in their communities and around the world. Provides information and a balanced perspective on the latest developments in research and treatment in this area.
  
  
• Lymphatic Research Foundation, the nation’s leading patient advocacy organization devoted to advancing lymphatic research to find improved treatments and cures for lymphatic diseases, lymphedema and related disorders. LRF is an important advocate and resource for the lymphatic disease and lymphedema community.
  
  
• 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.
  
  
• Norsk Forening For Sturge-Weber Syndrom- Norwegian Foundation for Sturge-Weber syndrome (NFSW) is a nationwide organization for people with Sturge-Weber syndrome, and their relatives. Knut Sletten is the Director.
  
  
• 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 cjoyner@operationsmile.org. The toll-free number for the Domestic Medical Program: 1-877-SMILE50.
  
  
• Parentsknow.com the largest and most visited parenting website in New York City.
  
  
• 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.
  
  
• United Kingdom Birthmark Support Group - Individuals and families affected by hemangiomas, port wine stains and other vascular birthmarks living in the United Kingdom region.
  
  
• 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