• 29Nov

    UK’s first rare disease strategy recognises importance of involving patients

    The UK’s first strategy to help build understanding of rare diseases and boost research to find effective treatments and therapies was launched last week by Health Minister Lord Howe.

    Rare Disease UK (the national alliance for people with rare diseases and all who support them), in conjunction with the Department of Health in England and Great Ormond Street Hospital, GOSH held an event to mark the publication of the UK Strategy. Earl Howe, Minister in charge of rare diseases, announced key themes in the UK Strategy, stating that a priority is to empower patients; ensuring that patients are listened to, informed and consulted every step of the way. The Minister confirmed the Government was committed to working closely with patients groups and others to improve services for those affected by rare conditions.

    Alastair Kent OBE, Chair of Rare Disease UK, welcomed the UK Strategy for Rare Diseases, stating that patients can now have a clear expectation of what the NHS aspires to provide for them, wherever they live in the UK. He stressed that that the UK Strategy is just the beginning of the process and we must now focus on the implementation.

    The strategy recognises that patients with access to well signposted sources of reliable information ‘can help clinicians with decisions about referral and diagnosis’. The full strategy document can be read here.