The Government Has Announced Plans To Implement the UK Strategy For Rare Diseases

Thanks to your efforts, the Government has finally announced it will develop plans to implement the UK Strategy for Rare Diseases in England!

At a Westminster debate yesterday afternoon, Philip Dunne MP, Minister of State for Health, stated that NHS England will develop an implementation plan for the commitments outlined in the UK Strategy for Rare Diseases that it can influence by the end of the year. For those commitments that are outside of the scope of NHS England, the Department of Health will support its arm's length bodies to coordinate plans for implementation.

This is a fantastic result for patients and families affected by rare, genetic and undiagnosed conditions in England and across the UK, and will provide the rare disease community with an effective tool to hold the Government to account to improve services and care for patients.

Parliamentarians discussed a number of issues facing rare disease patients in their constituencies, and highlighted problems with the delivery of services across the four nations of the UK. The proposed changes to the NICE's Highly Specialised Technologies (HST) evaluation programme was also discussed.

Responding to the debate, Philip Dunne MP, Minister of State for Health, reiterated Nicola Blackwood MP's, Parliamentary Undersecretary of State for Public Health and Innovation, personal commitment to ensuring the aims of the Strategy are fully realised:

"I can confirm to the House that I have agreed with the Chief Executive of NHS England that by the end of this year he will deliver an implementation plan for those of the 51 commitments of the UK strategy for rare diseases for which NHS England has lead responsibility. For those commitments that fall outside NHS England's remit, the Department will work collaboratively across stakeholders to contribute to the implementation plan."

Without the efforts of the rare disease community responding to the APPG's inquiry, contacting their local MPs to share their experiences, and raising awareness through social media and other channels. this outcome would not have been possible. Thank you for your support.

We would also like to thank the Rare Disease UK Patient Empowerment Group, clinicians and industry representatives who have supported the campaign for the development of an implementation plan for the Strategy in England.

Finally, thanks to Ben Howlett MP and his colleagues in the APPG for championing the needs of rare disease patients in Parliament and ensuring that our voices are heard. We will continue to work with the APPG to ensure that the commitments outlined in the Strategy are implemented in all four nations of the UK.