Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, with reference to the Royal College of General Practitioner's decision to announce their intention to remove the Ehlers-Danlos syndromes (EDS) toolkit for GPs from their website, if he will work with EDS UK to facilitate a review of the toolkit and agree its future location.

The Government published the new United Kingdom Rare Diseases Framework in January 2021 which outlines the key priorities for rare diseases in the UK over the next five years. One priority area, as identified through the ‘national conversation’ on rare diseases, is to further increase awareness of rare diseases such as Ehlers-Danlos syndromes (EDS) amongst health professionals. Development of nation-specific action plans for how each of the four UK nations will deliver on these priorities will begin in 2021 and will involve further engagement with the rare disease community. The use of online toolkits will be considered while working towards this priority.