In recent decades, thousands of people have been through the journey of discovering their connection with Ehlers-Danlos syndromes. On average, it takes over 19 years for individuals to gain proper recognition of their condition, due to the huge range of symptoms and a lack of clinical awareness. This means an average 19 years of not living with an accurate diagnosis.
As a charity we are strongly focussed on individuals, with the goal of making a positive impression on those impacted by EDS. We provide support by actively advocating and educating the general public and medical community through national campaigns; financially supporting individual sufferers and their families through offering grants; and contributing to vital clinical research activities.
Have a ballot place in an event?
We welcome ALL those with ballot places in any sporting event to fundraise for Mind Body EDS. By choosing us, you’ll be giving yourself a stronger purpose to race whilst making a real positive impression on the lives of those suffering with Ehlers-Danlos syndromes. So if you’re lucky to have gained a place, we’d love for you to contact us here. We rely upon your efforts and donations to support us in being able to continue and fulfill our mission.
Mind Body eds sponsors its first ‘global learning conference’ by the ehlers-danlos society in nashville, usa
During the Spring of 2018, we started a campaign to raise awareness through Instagram of the length of time it can take to reach a diagnosis of Ehlers-Danlos Syndromes. Click below to read the individual stories of some of our followers who shared their story via #myEDSdiagnosis