Birthmarks

A: Below are some groups relating to birthmarks.

•  About Face – A 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 – A non-profit international voluntary health organization created by people affected by cavernous angioma (cerebral cavernous malformations).

•  Birth Defect Research for Children, Inc. – A non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children.

•  Changing Faces – A website in the UK dedicated to inform, challenge and inspire – and ultimately change the way we all see disfigurement.

•  Children’s Craniofacial Association – A non-profit organization dedicated to improving the quality of life for people with facial differences and their families.

•  Children’s Miracle Network – A 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 – A Netherlands website for help and information on CMTC.

•  Faces – Dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.

•  KidsHealth – Providing doctor-approved health information about children from before birth through adolescence.

•  KT Foundation – A non-profit organization to benefit those with Klippel-Trenaunay syndrome.

•  Klippel Trenaunay Syndrome Support Group –  Established to provide information about the group and about Klippel-Trenaunay Syndrome, and to provide families, adults with K-T, and professionals with links.

•  Miracle Flights – Provides 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 – This 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 – Dedicated to providing information and assistance on the diagnosis and treatment of vascular anomalies.

•  Operation Smile – Provides life-changing surgeries to children throughout the world suffering from correctable facial deformities.

•  Sturge-Weber Syndrome Community – 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 – A non-profit organization dedicated to serving people with PWS, SWS, and KT and their families.

•  The Disfigurement Guidance Center – 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 – 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 – Canadian website for pediatric glaucoma and related eye conditions.

•  Vascular Birthmarks Foundation – International charitable organization that provides support and informational resources for individuals affected by hemangiomas, port wine birthmarks, and other vascular birthmarks and tumors, sponsors relevant research and promotes physician education.

•  Von Hippel-Lindau Family Alliance – Dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by Von Hippel-Lindau disease.

Support Groups/Individuals and Parents – Discussion boards and support groups for birthmarks and related issues.

•  Birthmarks and Hemangiomas (iVillage) – Support, encouragement, and friendship.

•  PHACES Support (MSN Groups) – Public forum for parents and individuals living with PHACES.

•  Sturge-Weber Syndrome Support Group (MSN Groups) – Public forum for parents and individuals living with Sturge-Weber syndrome.

•  Vascular Birthmarks Support (MSN Groups) – Public forum for parents and individuals living with vascular birthmarks.