The VEDS Movement, a new division of The Marfan Foundation, is excited to announce the launch of its website for the VEDS community, TheVEDSMovement.org.
“This is a huge step towards reducing the confusion between Vascular Ehlers-Danlos syndrome (VEDS) and other forms of Ehlers-Danlos Syndrome (EDS),” said Katie Wright, director of The Movement. “The website is designed to provide the VEDS community with the most up-to-date information on the condition and a place to connect with other affected individuals and families.”
- Information about current treatment and management options
- Signs of emergencies related to VEDS and tips for preparing for them
- Information about the diagnostic process and criteria
- Links to key research papers to help health professionals care for individuals with VEDS, as well as an option to have The VEDS Movement connect a health professional with a VEDS expert for advice
- Find a doctor feature for individuals who are seeking a knowledgeable physician
- Rotating news on the home page for those living with VEDS
- Recordings of VEDS-specific webinars conducted by The Marfan Foundation and a list of upcoming webinars through The VEDS Movement
- Resources to meet other people living with VEDS, including through VEDS-specific virtual support groups and The Marfan Foundation’s Annual Conference, regional symposiums, and Walk for Victory program
- Current research studies enrolling individuals with VEDS
- Information for researchers about grants available through The Marfan Foundation’s research grant program
About The VEDS Movement
The Marfan Foundation launched The VEDS Movement in October to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS). By pursuing the most innovative research, educating the medical community, general public and affected individuals, and providing support to patients, families, and caregivers, the Movement charges forward to improve outcomes for those living with VEDS.
The Marfan Foundation’s Professional Advisory Board, which is comprised of the country’s leading experts on VEDS, Marfan, and other connective tissue conditions, provides medical oversite. A VEDS Steering Committee, consisting of leading VEDS patient advocates, provides community input on the development of programs and services.
To join the Movement, please visit the website and sign up for updates.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.