WHO DOES YOUR ORGANIZATION SERVE?
The Ehlers-Danlos Society serves both patients and families who are affected by the genetic disorder and health care professionals who are working to develop ground breaking treatment for the condition.
WHAT IS THEIR BIGGEST CHALLENGE?
With a prevalence between 1 in 2,500 to 1 in 5,000, six different defined types and multiple different presentations, some of them hidden, Ehlers-Danlos Syndrome (EDS) is a very difficult condition to diagnose and treatment options a limited.
The horror stories of misdiagnosis to outright dismissal and suggestion of Munchausen syndrome have been way too prevalent within the EDS community. The right for an early diagnosis is at the forefront of the Society’s vision followed by the need for recognition and respect.
HOW DO YOU HELP THEM?
Collaborative research – bringing together medical professionals from all over the world to work on ground breaking treatment into this condition.
Organizing medical symposiums every two years to update the diagnostic criteria and management and care guidelines.
Bringing together and uniting our community, providing annual conferences to distribute information and create opportunities to interact.
Producing reliable up-to-date medical literature though our esteemed medical and scientific board
Signposting both patients and medical professionals to information, resources, support and education.
Uniting support groups and charities from around the world, providing resources and information where needed.
Building chapters so that The Ehlers-Danlos Society becomes a recognized brand globally. One person fighting is a start, but many together build an army.
Giving HOPE to all those whose lives are affected by Ehlers-Danlos syndrome.
WHERE CAN WE FIND OUT MORE?
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