Supporting Organisations
The Ehlers-Danlos Support UK
EDS UK was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes. We aim to help them live a full, active and positive life.
The Ehlers-Danlos Society
We are a proud member of the EDS & HSD Global Alliance at The Ehlers-Danlos Society.
The VEDS Movement
We are a division of The Marfan Foundation dedicated to charging forward and making change for everyone affected by vEDS in the US.
FIGHT vEDS
Our mission is to arm vEDS patients and physicians in the US with up-to-date information on how to fight vEDS and to provide information about promising new research and treatments.
The Aortic Dissection Charitable Trust
The Aortic Dissection Charitable Trust aims to improve the diagnosis of aortic dissection and bring consistency of treatment across the whole patient pathway.
beat SCAD
Beat SCAD is a charity whose mission is to increase awareness of a heart condition that is currently rare and under-diagnosed.
Aortic Dissection Awareness UK
We are the voice of Aortic Dissection patients in the UK & Ireland. Providing friendship, support and advice during their most challenging times.
Marfan Foundation
The Marfan Foundation is a nonprofit organization that saves and improves lives while creating a community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.
EURORDIS
We empower, partner, and advocate for people living with a rare disease in Europe.
Vascular Voice Network
Vascular Voice Network seeks to bridge this gap by uniting diverse, rare and common condition organisations around common vascular symptoms and challenges.
Medics For Rare Disease
Our Mission: To shape a medical profession that can provide people living with rare conditions a timely diagnoses and excellent care.
