UK Rare Disease Strategy

“JOINING TOGETHER TO MAKE LIFE BETTER FOR THOSE WITH A RARE DISEASE”

NIRDP WELCOMES UK RARE DISEASE STRATEGY

The Northern Ireland Rare Disease Partnership welcomes the UK’s Rare Disease Strategy, and the commitment it gives to ensuring that no one gets left behind just because they have a rare disease.

How rare diseases, like Muscular Dystrophy, Huntington’s Disease, or Spina Bifida, are diagnosed, treated and managed, so that those affected can live their lives to the fullest possible extent, is important for all of us. Failures in the system lead to wasted resources and needless suffering.

The UK Rare Disease Strategy was developed with the involvement of Patient Groups, Clinicians, academics, and others: we in the Northern Ireland Rare Disease Partnership had a voice in the process. This approach is a step forward in empowering patients and families.

The Strategy provides that that the Northern Ireland Implementation Plan should set out tangible and achievable steps towards:

  • Empowering those affected by rare diseases
  • Identifying and preventing rare diseases
  • Improved diagnosis and prevention of rare diseases
  • Better co ordination of care; and
  • Improved research opportunities and translation of research into practical treatments.

We look forward to working with the DHSSPSNI and Health Authorities, and with colleagues across the UK, Ireland and further afield, to develop the Northern Ireland Implementation Plan, and to make it a reality.

The UK Rare Disease Strategy, signed by all 4 UK Health Ministers, was published on 22 November 2013. A copy of the Government Press Release is available on the Department of Health website

Minister Poots’ Statement will be available on DHSSPSNI’s website

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