“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.”
“The announcement from the Minister that NHS England will produce a plan for the implementation of the commitments for which it is responsible in the UK Strategy for Rare Diseases is fantastic news. For too long patients with rare diseases have been waiting for NHS England to accept and act on its responsibility to provide them with state of the art care and support. We look forward to working with them to develop a plan which will deliver the commitments made by the Government for all the patients and families in England who struggle everyday with the consequences of a serious unmet medical need. Furthermore, we are delighted with the announcement that the Department of Health will take an active role in coordinating the work of the various agencies such as Public Health England and NICE in delivering their input to improving the circumstances of those living with rare diseases in England.
We are grateful to the members of the APPG on Rare, Genetic and Undiagnosed Conditions, chaired by Ben Howlett MP, for their commitment to ensuring that patients and families with rare diseases have had their voices heard.”