Petition Action an effective NHS care pathway for patients with Ehlers Danlos Syndrome

EDS is an inherited connective tissue abnormality.People with EDS have no care within the NHS. Healthcarer's have no access to formal training, forcing patients to self fund private care with the few specialists available, in order to manage their multiple,painful & life threatening disabilities.

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EDS UK and the Royal College of GP's are working together to improve education on EDS and to create a 'toolkit' for GP's managing patients with the condition. (https://www.ehlers-danlos.org/news/spotlight/).

At present, patients like myself are forced to fundraise for urgent and long term care to manage disabilities, extreme pain, dislocations, and at times life saving surgeries abroad. No specialist area has claimed the condition leaving GP's unaware of who to refer patients to for their care

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