First EDS toolkit launched for GPs

The Royal College of General Practitioners (RCGP) has launched an Ehlers-Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care.

The toolkit sets out the latest thinking in EDS, including the new approaches to diagnosis and treatment set out by the International Consortium on the Ehlers-Danlos syndromes in 2017, as they relate to primary care. It 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.

The RCGP’s Clinical Champion for Ehlers Danlos syndromes, Dr Emma Reinhold, who developed the toolkit, commented “I want to thank everyone involved in getting the EDS toolkit up and running. It was very much a team effort. As with any such undertaking, there have been times when the task has felt insurmountable but I hope the project will be seen as a truly significant.”

Kay Julier, Managing Director of The Ehlers-Danlos Support UK said, “Having such practical and up-to-date information about the Ehlers-Danlos syndromes, specifically targeted towards GPs and in the RCGP’s easily accessible format, is a huge step forward for everyone in the UK affected by these challenging conditions. EDS UK is proud to have funded the EDS toolkit and we look forward to seeing the difference we are sure it is going to make to patients and their families.”

EDS UK would like to thank Dr Reinhold for leading the development of the toolkit and the RCGP for accepting the project. We are also very grateful to the following people who have given significant input and helped with reviews: Lisa Jamieson from The Wingate Institute of Neurogastrology; Dr Lesley Kavi, Chair of PoTS UK; Claire Smith from the HMSA; Dr Hanadi KazKaz, Chair of EDS UK’s Medical Advisory Panel; Dr Alan Hakim, EDS UK Medical Advisory Panel member; Dr Philip Bull from the HMSA.

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