In January 2018, the Department of Health and Social Care and NHS England published implementation plans for the UK Strategy for Rare Diseases, to work in parallel to ensure all 51 commitments are met. Today the Department of Health and Social Care have published an update to their implementation plan. You can find the update available here.
Pseudomyxoma Survivor is one of over 125 patient organisations that have signed Rare Disease UK’s open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases. The letter has now 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. You can read the letter here.
At a 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, we support Rare Disease UK’s mission to seek 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.