List of rare diseases UK

Genetic Alliance UK's initiative Rare Disease UK (RDUK) has secured the Highly Commended award in the Payers/Policymakers category at the Communiqué Awards 2014.

The high commendation was received for RDUK's successful campaign to secure a UK Strategy for Rare Diseases for the 3.5 million affected by rare diseases in the UK who need health services that deliver better health outcomes.

Since Genetic Alliance UK launched RDUK in 2008, the campaign has brought together and mobilised the rare disease community through RDUK's membership. We have sought to empower the rare disease community to secure political support to increase the quality, content and the development of the UK Rare Diseases Strategy. Our policy and public affairs work prompted the four UK governments to work together to produce a single comprehensive UK Rare Diseases Strategy launched in November 2013.

This is what the judges had to say:

"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."

The campaign

Our survey of 600 families in 2010 demonstrated why improvements to rare disease healthcare were needed:

  • 46% of patients with a rare disease had to wait over one year for a correct diagnosis following the onset of symptoms, 20% had to wait over five years for a diagnosis.
  • 52% of patients or families felt they weren't given enough information on their condition following diagnosis.
  • 75% of patients do not have a dedicated care coordinator. 25% of all patients have to attend either 3 or 4 different clinics for their condition.
  • Only 35% of patients or families are informed of clinical trials aimed at developing treatments for their condition.
  • Patients and families experience inconsistencies in access to medicines

With over 6, 000 different rare diseases a UK-wide Strategy for Rare Diseases was vital.

In 2011, we published our landmark document 'Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy – created with experts and over 1000 consultation responses received from the rare disease community across the UK on five topic areas (Prevention & diagnosis; Commissioning & planning; Patient care, information & support; Coordinated care and Coordination of research), setting out 80 recommendations for the Strategy.

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