Our key objectives as an organisation are to provide support in three key areas:
We are about raising awareness and educating the public and medical community about the range of Ehlers-Danlos syndromes and how widespread they are, specifically advocating across the UK’s medical schools. By uniquely focussing on the doctors of tomorrow we aim to provide better outcomes for EDS patients - and in this way differentiate ourselves from other charities. The earlier a patient can get a diagnosis, the earlier their life can improve and potentially mitigate disabling or life-threatening medical complications that can occur depending on the progression and severity of their EDS.
We are about financially supporting and contributing to individuals and families who are directly impacted by EDS enabling them to have the option (NHS or private) to access the limited EDS specialists to diagnose, manage and treat the conditions in the UK. Key interventional diagnositics and treatments for some patients are only offered in specialist locations, resulting in substantial travel and accommodation costs for many families, even when treatments are available on the NHS. Fundamentally, we aim to ensure that delay through lack of affordability does not determine a worse outcome for the patient.
We are about supporting research to find causes, treatments and potential cures of the Ehlers-Danlos syndromes, and improving the quality of life of many patients affected by this genetic condition.