Patient Resources

Learn more about the organizations helping patient and their families affected by vascular anomalies.

Educational Resources and Support Groups

• CLOVES Syndrome Community: Offers information, support, financial aid, and encourages research within the CLOVES community.
• FACES – National Craniofacial Foundation: Delivers support, educational resources, financial assistance, and more to individuals with craniofacial conditions.
• The Foundation for Faces of Children: Supplies resources and information for those affected by craniofacial differences.
• International Society for the Study of Vascular Anomalies (ISSVA): A multidisciplinary international society of physicians, scientists, and health care providers united by an interest in vascular anomalies.
• K-T (Klippel-Trenaunay) Support Group: Offers support and information to those dealing with Klippel-Trenaunay syndrome and their relatives.
• Lymphangiomatosis & Gorham's Disease Alliance: Provides insights into the diseases, offers patient resources and support, and backs research endeavors for lymphangiomatosis and Gorham's disease.
• National Lymphedema Network Inc.: Delivers educational resources and guidance for those affected by lymphedema, healthcare workers, and the wider community.
• National Organization for Rare Disorders (NORD): Offers comprehensive information, research, and advocacy for a variety of rare diseases.
• Project FAVA: Aims to empower the Fibro-Adipose Vascular Anomaly (FAVA) 
  community through outreach, education and connection to researchers and medical organizations.
• Proteus Syndrome Foundation: Established to support, educate, and fund research and grants aimed at curing Proteus syndrome.
• PTEN Foundation: Founded to find treatments or therapies for PTEN Syndromes.
• The Sturge-Weber Foundation: Serves as a comprehensive source of information regarding Sturge-Weber syndrome and port wine stains.
• Vascular Birthmarks Foundation: Offers information on the treatment and education of vascular malformations.
• VHL Alliance: Committed to enhancing the lives of those with VHL (Von Hippel-Lindau disease) through better diagnosis, treatment, and quality of life initiatives.