MPS Society welcomes new UK Rare Diseases Framework

Updated: Jan 26

The MPS Society welcomes the new UK Rare Diseases Framework, a national vision on how the UK will improve the lives of those living with rare diseases. Published by the Department of Health and Social Care on 9 January 2021 this framework clearly recognises the unique challenges faced by the rare disease community and commits to a strategy which, if realised, will enable a more equitable healthcare system.

“We applaud the timeliness and vision that this framework represents and will be eagerly watching as it is implemented,” says Bob Stevens, Group Chief Executive of the UK MPS Society.

“What we now need to see is how this plan is delivered in real life and we will be looking for evidence and more detail around its delivery. We expect action.”

The Framework outlines four priorities for rare diseases in the UK over the next 5 years:

  • helping patients get a final diagnosis faster

  • increasing awareness of rare diseases among healthcare professionals

  • better coordination of care

  • improving access to specialist care, treatments and drugs

The rare disease community was fundamental in identifying these priorities as the views of the patients, their families, clinicians, researchers and rare diseases patient organisations, including the MPS Society, were gathered through the National Conversation on Rare Diseases Survey in October 2019.