EDS UK sign the Rare Disease UK’s open letter to the Government

The Ehlers-Danlos Support UK signed the Rare Disease UK’s open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases.

The letter has been signed by over 125 patient organisations in the space of a week and all in time for Rare Disease Day! A copy of the letter has now been sent to Baroness Nicola Blackwood, the Minister in charge of rare diseases, and Rare Disease UK have requested a meeting with her to discuss this further.

At their parliamentary reception on Wednesday, Baroness Blackwood, said, ‘post 2020, there will be an overarching framework to improve the lives of all those living with rare conditions’ but that it was ‘too early to know exactly what this would look like’.

Whilst this is welcome, Rare Disease UK will be seeking a firm commitment from Government that a review and refresh of the UK Strategy for Rare Diseases will take place. You can read her full speech from the event here.

You can download a copy of the letter here.

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