Birthmarks

A: Here is a list of support groups for individuals and families caring for birthmarks.

•  About Face – In order to help people with facial disfigurements and their families, this non-profit organization provides information, emotional support, and educational programs.

•  Angioma Alliance – Individuals with cavernous angioma established this international non-profit health organization as a way to help others (cerebral cavernous malformations).

•  Birth Defect Research for Children, Inc. – Birth defects information and support services are provided by a non-profit organization to expectant and new parents.

•  Changing Faces – A UK website committed to informing, inspiring, challenging, and changing how we view disfigurement. 

•  Children’s Craniofacial Association – People with facial differences and their families can benefit from a non-profit organization that works to improve their quality of life.

•  Children’s Miracle Network – A non-profit organization that raises money for children’s hospitals across North America in order to save and improve the lives of children.

•  Cutis Marmorata Telangiectatica Congenita – A Netherlands website that helps and informs others on CMTC.

•  Faces – Serving patients with craniofacial disorders caused by disease, trauma, or birth.

•  KidsHealth – Information on health for children, from conception to adolescence, that is approved by doctors.

•  KT Foundation – A non-profit organization dedicated to individuals with Klippel-Trenaunay syndrome.

•  Klippel Trenaunay Syndrome Support Group – Dedicated to educating the public about Klippel-Trenaunay Syndrome and providing resources for K-T families, adults with the condition, and healthcare professionals.

•  Miracle Flights – To ensure that no child is denied medical treatment because they cannot afford the transportation costs, the company provides air transportation.

•  National Organization for Rare Disorders – A federation of non-profit health organizations dedicated to helping people with “orphan” diseases and supporting the organizations that help them. As an organization, NORD’s mission is to find a cure for rare diseases by educating the public and advocating for funding for rare disease research.

•  National Organization of Vascular Anomalies – Provides information and assistance regarding vascular anomalies and their diagnosis and treatment.

•  Operation Smile – Gives children with correctable facial deformities around the world access to life-changing surgeries.

•  Sturge-Weber Syndrome Community – A division of the Vascular Birthmarks Foundation that offers free and voluntary support and services to people and families affected by SWS and vascular birthmarks, while also funding research and spreading awareness among physicians and the general public.

•  Sturge-Weber Foundation – A non-profit organization that serves individuals with PWS, SWS, and KT, as well as their families.

•  The Disfigurement Guidance Center – Serves as a worldwide resource center for disfigurement treatment and treatment-related information.

•  The Hemangioma Treatment Foundation – Treats children with hemangiomas and other vascular birthmarks, as well as educating medical professionals on how to treat these conditions. International support, treatment, and education services will be provided based on need, not on a person’s country of origin by this organization.

•  The Pediatric Glaucoma & Cataract Family Association – Canadian website for pediatric eye conditions, including glaucoma.

•  Vascular Birthmarks Foundation – An international non-profit organization dedicated to supporting and educating people with hemangiomas, port wine stains, and other vascular birthmarks and tumors, as well as funding relevant research.

•  Von Hippel-Lindau Family Alliance – Dedicated to improving Von Hippel-Lindau disease diagnosis, treatment, and overall well-being for those who are affected and those who care for those affected by the disease.

Support Groups/Individuals and Parents – Support groups and boards for those with birthmarks and related conditions.

•  Birthmarks and Hemangiomas (iVillage) – Offers support, discussion, and bonding for those with birthmarks and hemangiomas.

•  PHACES Support (MSN Groups) – A PHACES support group for individuals and parents.

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

•  Vascular Birthmarks Support (MSN Groups) – Group for individuals and parents caring for vascular birthmarks.