Royal College of GPs to withdraw EDS toolkit

UPDATE 01/02/2021: Following a letter from medical professionals and a petition from patients, we are very pleased that the RCGP has agreed to host the EDS GP toolkit for another six months. This will give us time to find another host and to coordinate updates. Thank you to everyone who has helped to make this happen. You can visit the tool kit here.

We were very disappointed to be told just before Christmas that the Royal College of GPs (RCGP) wants to withdraw the EDS toolkit for GPs. The College plans to remove the toolkit from the RCGP website at the end of January. The RCGP cited pressure on its limited resources as a result of the pandemic and contention around the toolkit from various sources as reasons for its decision.

While we understand that the College wants to prioritise use of its resources, the move is a huge backwards step for people with EDS or HSD, their families, and the friends who support them.

Following its launch in May 2018, the toolkit was accessed in its initial few months by more people than for any other preceding toolkit: over 24,000 from nearly 40 countries across five continents in the first four months alone and, since then, by around 2,000 unique visitors per month.

EDS UK funded the development of the toolkit and worked in collaboration with the RCGP, Dr Emma Reinhold, and a group of other clinicians and scientists on this important project.

We are calling on the College to reconsider its decision and to continue to host the toolkit for a further 18 months. During this time, we would like to work with medical professionals and colleagues in other organisations to facilitate a review of the toolkit and agree its future location.

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