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National Rare Disease Plan

National Rare Disease Plan content

The first National Rare Disease Plan for Ireland 2014-2018 was published in July 2014 by the Department of Health. The publication was the culmination of many years of work by many different patient organisations working with rare diseases, including Fighting Blindness. It is currently under review.

The National Rare Disease Plan is a framework for action at a national level and envisages an Ireland where:

  • People with rare disease receive timely access to the best possible evidence based, patient-centred and family-centred screening (as appropriate), diagnosis, treatment and care through all stages of their lives.
  • The needs and experiences of people with rare disease are recognised, understood and addressed within all aspects of the Irish health system, including policy, services and research/information systems.

The plan contains 48 recommendations in a number of key areas, including:

  • Recognition of rare disease – information and research
  • Prevention, diagnosis and care
  • Enhancing access to appropriate drugs and technologies
  • Empowering, protecting and supporting rare disease patients and carers
  • Implementation, monitoring and review of the National Rare Disease Plan

A full copy of the plan is available via this link.

The Department of Health issued an interim report on the implementation of the plan in February 2017, it is available on their website here.