Port Wine Stain
Birthmark Groups
• About Face - http://aboutfaceusa.org/ non-profit organization dedicated to providing information, emotional support, and educational programs to individuals who have a facial disfigurement, and to their families.
• Angioma Alliance – http://www.angiomaalliance.org/ non-profit international voluntary health organization created by people affected by cavernous angioma (cerebral cavernous malformations).
• Birth Defect Research for Children, Inc. - http://www.birthdefects.org/ non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children.
• Birthmarks.com – http://birthmarks.com the premiere resource site for support and information about vascular and pigmented birthmarks.
• Changing Faces - http://changingfaces.org.uk/ website in the UK dedicated t o inform, challenge and inspire - and ultimately change the way we all see disfigurement.
• Children Anguished with Lymphatic Malformations - http://www.staycalm.org/ a non-profit organization formed in 1993 to provide support to families of children with lymphatic malformations.
• Children's Craniofacial Association - http://www.ccakids.com/ nonprofit organization dedicated to improving the quality of life for people with facial differences and their families.
• Children's Miracle Network - http://www.cmn.org/ non-profit organization dedicated to saving and improving the lives of children by raising funds for children's hospitals across North America.
• Cutis Marmorata Telangiectatica Congenita - http://www.cmtc.nl/HTML/eng_start.php Netherlands website for help and information on CMTC.
• Faces - http://www.faces-cranio.org/ dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
• Forward Face - http://www.forwardface.org/ to help children with craniofacial conditions, and their families, find immediate support that helps empower them to successfully manage the craniofacial condition.
• Hereditary Hemorrhagic Telangiectatica - http://www.hht.org/web/ non-profit organization whose purpose is to support patients and families and educate medical professionals.
• KidsHealth - http://www.kidshealth.org/ providing doctor-approved health information about children from before birth through adolescence.
• KT Foundation – http://ktfoundation.org non-profit organization to benefit those with Klippel-Trenaunay syndrome.
• Klippel Trenaunay Syndrome Support Group - http://www.k-t.org/ established to provide information about the group and about Klippel-Trenaunay Syndrome, and to provide families, adults with K-T, and professionals with links.
• Let's Face It - http://www.faceit.org/ nonprofit network that links people with facial disfigurement.
• Miracle Flights - http://miracleflights.org p rovides transportation via airplane to ensure that no child is denied medical treatment because of the inability to pay for transportation.
• National Organization for Rare Disorders - http://www.rarediseases.org/ 501(c) 3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
• National Organization of Vascular Anomalies - http://novanews.org/ dedicated to providing information and assistance on the diagnosis and treatment of vascular anomalies.
• Operation Smile - http://www.operationsmile.org/ provides life-changing surgeries to children throughout the world suffering from correctable facial deformities.
• Share A Smile Foundation - http://www.shareasmilefoundation.org/ provides financial support to children requiring plastic surgery and/or medical treatments to repair or remove vascular anomalies, but whose families are not financially able to pay for this service.
• Sturge-Weber Syndrome Community – http://swscommunity.org a branch of the Vascular Birthmarks Foundation, providing support and services freely and upon a volunteer basis for individuals and families living with SWS and vascular birthmarks, while sponsoring research and promoting physician education and awareness, as well as education of the public at large.
• Sturge-Weber Foundation – http://sturge-weber.com non-profit organization dedicated to serving people with PWS, SWS, and KT and their families.
• The Birthmark Support Group - http://www.btinternet.com/%7Ebirthmarksupportgroup/ provides a UK based support group for anyone with a birthmark.
• The Disfigurement Guidance Center - http://www.timewarp.demon.co.uk/dgc.html acts as an international information and resource bureau and gives information on treatments, literature, compensation and all other relevant services and facilities.
• The Hemangioma Treatment Foundation - http://www.hemangiomatreatment.org/ provides treatment to children who are affected by hemangiomas and other vascular birthmarks and educates physicians in the management of these lesions. This is an international organization that will offer support, treatment, and education based on need not country of origin.
• The Pediatric Glaucoma & Cataract Family Association - http://www.pgcfa.org/ Canadian website for Pediatric glaucoma and related eye conditions.
• Vascular Birthmarks Foundation - http://birthmark.org international charitable organization that provides support and informational resources for individual affected by hemangiomas, port wine stains, and other vascular birthmarks and tumors, sponsors relevant research and promotes physician education.
• Von Hippel-Lindau Family Alliance - http://www.vhl.org/ Dedicated
to improving diagnosis, treatment, and quality of life for individuals
and families affected by Von Hippel-Landau disease
Support Groups/Individuals and Parents - Discussion boards and support groups for birthmarks and related issues.
• Birthmarks and Hemangiomas (iVillage) - http://messageboards.ivillage.com/iv-ppbirthmarks/ support, encouragement and friendship.
• Birthmarks and Hemangioma InterNETwork Support - http://members.tripod.com/~Michelle_G/indexH.html offers support, resources, and information on medical treatment of birthmarks and hemangiomas.
• Family Village - http://www.familyvillage.wisc.edu/index.htmlx a global community of disability-related resources.
• PHACES Support (MSN Groups) - http://groups.msn.com/PHACESyndromeCommunity public forum for parents and individuals living with PHACES.
• Sturge-Weber Syndrome Support Group (MSN Groups) - http://groups.msn.com/Sturge-WeberSyndromeCommunitySupport/ public forum for parents and individuals living with Sturge-Weber syndrome.
• Vascular Birthmarks Support (MSN Groups) - http://groups.msn.com/vascularbirthmarksupport/ public forum for parents and individuals living with vascular birthmarks.
