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.
The MPS Society believes the priorities establish clear and fundamental principles that all key stakeholders need to work together on, to make sure they happen. Our whole society benefits from the care and compassion it shows to those heavily disadvantaged by being part of a tiny patient population living with some of the most devastating diseases.
The Framework offers a rare opportunity to create both value to the taxpayer and equity for patients within a truly modern healthcare system.
Following the publication of the UK Rare Diseases Framework policy paper, phase 2 will see each nation develop an action plan, highlighting steps they will take to meet the shared priorities of the Framework.
We look forward to taking a full and active role in the development and roll out of this UK Rare Disease Framework action plan.
The UK Rare Diseases Framework Policy Paper is available in full on the Department of Health and Social Care website.
A PDF of the Framework is also available.
For support from an advocacy worker and to find out how the framework may affect you contact the Support and Advocacy Team. For any media enquiries or to discuss the views of the MPS Society contact the Communications Team.