A UK registered charity providing support to patients and families touched by Vascular Ehlers-Danlos syndrome (vascular EDS) across the UK and globally.
They are also proud recipients of The Queen's Award for Voluntary Service.
At the heart of the charity is Annabelle, the inspiration behind their patient organisation which was created in 2013 and their ultimate aim of "Our Challenge To Find Your Cure" for everyone affected by this condition.
The DEFY Foundation was created in 2014 in honor of the Yasick family, who knows first-hand the terrifying reality of life with vEDS. They strive to be a source of hope for all those living with vEDS and those around them that are impacted by it.
Their mission at the DEFY Foundation is two-fold – to raise awareness of Vascular Ehlers Danlos Syndrome and to raise funds to aid in medical research of the disease.
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.
They support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.
Their goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. Research is at the center of what they do, so that one day we will have a cure.
The Ehlers-Danlos Society was originally established as a nonprofit organization in 1985 as the Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995).
The EDS Today mission is to provide Ehlers-Danlos information, awareness, education, guidance and support for all those affected. Also for their families, the general public and those in the medical community.
They strive to bring recognition, identification and a correct diagnosis for ALL those affected. They are guided towards knowledgeable (skilled) medical professionals, appropriate treatments, preventive management, interventions and monitoring.
They advocate, support, assistance with medical crisis, networking and navigating the medical system. They help to foster funds for vital EDS research projects that could help improve the future and quality of life for the EDS patient and are committed to this mission!
The FIGHT vEDS team has been actively engaged in the vascular Ehlers-Danlos Syndrome community for years. Over that time, it became clear that most patients with vEDS wish they knew more about the disease, how to treat it, and what promising research is underway.
The mission of FIGHT vEDS is to arm vEDS patients and physicians with up-to-date information on how to fight vEDS and to provide information about promising new research and treatments.
THE MARFAN FOUNDATION
The Marfan Foundation's mission is to save lives and improve the quality of life of individuals with Marfan syndrome and other genetic aortic conditions, including vascular EDS.
The Foundation supports patients with Marfan syndrome, vascular EDS, and related conditions by supporting research, fostering a supportive community, and providing education to patients, medical professionals, and the general public.
A podcast and blog by a vEDS patient giving a view into the patient experience and aiming to raise awareness for vascular EDS.
In addition to the Staying Connected podcast and blog, videos can be found on YouTube under Translucent One (or click links from the Staying Connected blog).