Advocacy and Support Groups | Vascular Anomalies Center

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Contact the Vascular Anomalies Center

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.

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944