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There are many ways you can help children and their families get the care they need.
Listed below are organizations and support groups that may be helpful to families and patients.
A support group for people with facial differences
Blue Rubber Bleb Nevus Facebook Support Group
Provides a community for those with Blue Rubber Bleb Nevus Syndrome
CLOVES Syndrome Community
Provides information and resources, fosters a supportive community, provides financial assistance and supports research
Cloves Syndrome Foundation
Supports research and provides information on CLOVES
Provides support, resources, education, financial support and more for people with craniofacial differences
The Foundation for Faces of Children
Provides information and resources for people with craniofacial differences
Greater Boston Lymphedema Network
Provides support, information and advocacy in the hope of improving the quality of life for those with lymphedema
K-T (Klippel-Trenaunay) Support Group
Provides information and support for Klippel-Trenaunay Syndrome patients and their families
Lymphangiomatosis & Gorham Disease Alliance
Provides disease information, patient resources, support, and research support for those with lymphangiomatosis and Gorham's disease
National Lymphedema Network, Inc.
Provides education and guidance to lymphedema patients, healthcare professionals, and the general public
National Organization for Rare Disorders (NORD)
Provides information, research, advocacy, etc. for rare diseases
Proteus Syndrome Foundation
Founded to educate, support and raise money for grants and research towards finding a cure for Proteus Syndrome.
The Sturge-Weber Foundation
Acts as a clearinghouse of information on all aspects of Sturge-Weber syndrome, Klippel-Trenaunay syndrome and port wine stains.
Vascular Birthmarks Foundation
Provides educational and treatment information on vascular malformations
VHL Family Alliance
Dedicated to improving the diagnosis, treatment, and quality of life for VHL (Von Hippel-Lindau Disease) patients and their families.
Please note: The preceding information is provided as a service to visitors to our web site and does not represent an endorsement by the Vascular Anomalies Center or an assurance that the information in these sites is accurate and up-to-date. The most reliable source of information about vascular anomalies is a specialist associated with a major hospital.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”