VEDS Medical Research Guide
Comprehensive Overview of vEDS Findings
Genetics in Medicine Journal, 2014
Information about Genetic Testing for VEDS
University of Washington
The Marfan Foundation
In 2019, the Marfan Foundation decided to create a dedicated branch of their organization for vEDS. We are very excited to see how this develops in the coming months and are appreciative of their support of our community! Visit their website to find information about vEDS, or to contact a nurse or social worker who can provide answers to health-related questions and refer you to a doctor.
The Ehlers Danlos Society
Global organization serving patients of all 13 types of Ehlers Danlos Syndrome. See their numerous research initiatives and find links to scientific and medical articles and other resources.
Find helpful articles written in layman's terms about the latest research on vEDS, as well as many patient resources, including assistance with vEDS genetic testing and a "Find a Doctor" tool.
A united group of patients, family members, researchers, and clinicians dedicated to developing a patient-centered plan for scientific research to improve the management of vascular Ehlers-Danlos Syndrome. This group is currently enrolling patients for a natural history study - sign up here!
A UK-based vEDS nonprofit organization that raises funds for research, conducts awareness campaigns, and offers support and medical advice for those living with vEDS, such as a patient hotline.
A Texas-based vEDS nonprofit organization working to raise awareness of vEDS.
A Youtube channel created by vlogger and podcaster, Katie Wright, that discusses the struggles of daily life with vEDS.