Consultation on the first National Rare Disease Plan for Ireland

A National Steering Group was established by the Minister for Health, Dr James Reilly, in April 2011 to develop a policy framework for the prevention, detection and treatment of rare diseases based on the principles of high quality care, equity and to be patient centred. The policy will operate over a 5 year period and define priority actions subject to resource availability.

The membership of the group, which is chaired by the Department of Health, includes those organisations* with a remit or a special interest in relation to rare diseases.

Work on the development of a national plan by the group is ongoing and is focussing on areas related to rare diseases as follows:

  • centres of expertise,
  • orphan drugs and technologies,
  • research and information and
  • patient empowerment and support.

In preparation for the final phase of the plan’s development the National Steering Group is inviting stakeholders and anyone with an interest in or view on rare diseases to participate in a consultation process. A consultation day was held on 11th June 2012 and to facilitate further feedback an online form has been developed with the support of the HSE. This form can be accessed on the HSE’s website at and is available until Friday, 13 July 2012.

This facility gives a platform for those who have a rare disease or who care for someone with a rare disease to share their views. Also welcome are the views of clinicians, health care personnel, researchers and others whose work is related to rare diseases.

*HSE, HIQA, the Health Research Board, the Institute of Public Health in Ireland, the Irish Medicines Board the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI), the Genetic Rare Disorders Organisation (GRDO), Fighting Blindness, The Medical Research Charities Group and Bee for Battens.