Important web pages to visit
(listed in alphabetical order):
EDS and Related Disorders Global Registry
To join the 'Ehlers-Danlos Society EDS and Related Disorders Global Registry', and help researchers throughout the world to advance understanding of EDS, HSD, and related symptoms and conditions click here: www.ehlers-danlos.com/eds-global-registry/
General Practitioner (GP) Toolkit (for primary healthcare professionals, patients & carers).
The Royal College of General Practitioners Ehlers-Danlos syndromes (EDS) toolkit, created in partnership with EDS UK, hopes to begin a revolution in the recognition of inherited connective tissue disorders. This practical online guide describes the diagnostic clues which can enable GPs to recognise EDS as well as common comorbidities such as autonomic dysfunction, gastrointestinal dysfunction, mast cell active syndrome etc., The toolkit offers a comprehensive guide to approaching the management of people who have EDS in a primary care setting, as well as indications for onward referral.
EDS / HSD and related disorders online support community
Professionals Hypermobility Network (The Kent Model)
The Professionals Hypermobility Network (Kent Model), created in partnership with the Hypermobility Syndromes Association, educates health care professionals (via Masterclasses and online resources) and links hypermobility informed and friendly professionals and volunteers.
A programme for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD and associated symptoms and conditions. it is a guided model aimed at practice improvement, in which providers retain responsibility for patients, and gain increasing independence as skills, confidence, and self-efficacy grow.