Rare Disease UK: A UK Strategy for Rare Diseases
Summary of work
Genetic Alliance UK campaigned to secure a UK Strategy for Rare Diseases because the 3.5 million people living with a rare disease in the UK need health services that deliver better health outcomes. With over 6,000 different rare diseases a UK-wide Strategy for Rare Diseases was needed.
Through its campaign group Rare Disease UK (RDUK), the charity led a tenacious programme of public affairs and policy activities to increase awareness, share knowledge and secure political interest for rare diseases. Building a strong rare disease community of clinicians, industry, patients, patient groups and researchers, RDUK generated a comprehensive and compelling vision for a UK Rare Diseases Strategy.
RDUK shared this vision by delivering a series of 19 parliamentary events, innovative workshops, briefings, webinars and social media communications. RDUK worked alongside officials in all four UK governments to support and enable them to work together. In November 2013 the Strategy was published, signed by all four UK Health Ministers and with a commitment to monitor and implement it across the devolved nations.
Genetic Alliance UK continues to lead on ensuring the Strategy is realised and will make a difference in improving the lives and health outcomes of people living with rare diseases.
This campaign had some highly impressive achievements, at a time when everything would seem to have been working against them. To have engagement and traction with 250 patient groups and all four jurisdictions of the NHS is an indication that they've got it right and are doing all the right things. 2013 saw the culmination of outstanding work over a number of years. They thoroughly deserve this high commendation.