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 Specialist" page, but also invite you to learn more about specific diseases or patient support groups through the below organizations and links. 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 (Cutis Marmorata Telangiectatica Congenita) & Other Vascular Malformations

European Reference Network (VASCERN)
     -VASCA Magazine

Federal Association of Congenital Vascular Malformation (German)

Hevas (Dutch)

Klippel-Trenaunay (K-T) Support Group

Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

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

M-CM (Macrocephaly-Capillary Malformation Syndrome) Network

Project FAVA

VASCAPA

Vascular Birthmarks Foundation
     -Sturge-Weber Syndrome: Frequently Asked Questions

 

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