Patient Advocacy Organizations

Since the establishment of ISSVA in 1992, collaborations have been integral to the growth, awareness and improved diagnosis and treatment of patients with vascular anomalies. 

In addition to fostering collaboration amongst individual members representing a wide variety of specialties and geographic regions, ISSVA also networks with patient advocacy organizations. These organizations support ISSVA's initiatives and are a key contributor to providing patients with valuable educational resources while advocating for individuals with vascular anomalies

In addition to patient advocacy groups, there are other organizations and networks that support the vascular anomalies community. Learn More About Other Networks & Resources in the field of vascular anomalies.

We encourage patients to find a treating physician on our Multidisciplinary Teams page or through our "Find a Specialist" page, but also invite you to learn more about specific diseases or patient support groups through the below organizations and links (click on the logo to access the website). Please note that ISSVA does not endorse any of the below patient advocacy organizations or resources; this list is solely provided as a resource for physicians, patients and their families.

 

CLOVES Syndrome Community	CMTC & Other Vascular Malformations Cutis Marmorata Telangiectatica Congenita
Federal Association of Congenital Vascular Malformations (website in German)	Instituto KT Brasil (website in Portuguese)
Hevas (website in Dutch)
K-T Support Group Klippel-Trenaunay	Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
Lymphangiomatosis & Gorham's Disease Alliance Europe (LGD Alliance Europe)	M-CM Network Macrocephaly-Capillary Malformation Syndrome
Patients Association of Vascular Anomalies (PAVA) (website in Japanese)	Phace Syndrome Community
Project FAVA	PTEN Research Foundation
VASCAPA (VASCular Anomaly Patient Association)	Vascular Birthmarks Foundation
Vascular Anomalies Canada

 

*If you are involved with a patient advocacy organization that you feel should be included on this page, please e-mail info@issva.org.