The Minister for Health, Dr James Reilly TD has launched a public consultation process on a National Rare Disease Plan for Ireland.
The launch of this public consultation follows the Minister’s decision to establish a national rare diseases steering group in April 2011 charged with developing a policy framework for the prevention, detection and treatment of rare diseases.
The steering group, set to operate over a five-year period, is chaired by the Department of Health and includes members from the following organisation:the 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.
The national steering group is now inviting stakeholders, as well as people with rare diseases and their families, to participate in the consultation process. The contributions of clinicians, health care personnel, researchers and others whose work is related to rare diseases are also welcome.