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

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

CMTC (Cutis Marmorata Telangiectatica Congenita) & Other Vascular Malformations

Hevas (Dutch)

Klippel-Trenaunay (K-T) Support Group

Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

Lymphangiomatosis & Gorham's Disease Alliance Europe (LGD Alliance Europe)

Vascular Birthmarks Foundation

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

Last updated: December 7, 2020