Rare Diseases Taskforce
The Rare Diseases Towards 2013 Taskforce has been set up by the Medical Research Charities Group (MRCG), the Genetic and Rare Disorders Organisation (GRDO) and the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI). The Taskforce brings the three umbrella organisations together to work collaboratively to ensure that the needs of the Rare Diseases stakeholders are represented in the National Strategy for Rare Disease 2013.
The Minister for Health has established a National Steering Group which is tasked with developing a five year national plan and which will deal with the diagnosis, prevention, management, treatment and research of rare diseases in Ireland. The key principals governing the plan will be those of patient centeredness, quality, care and equity of access to treatment.
The Rare Disease Taskforce will support this National Steering group and provide input from the appropriate stakeholders. The aim of the 2013 Taskforce is the delivery by the State of a comprehensive, targeted and achievable National Strategy for Rare Diseases by 2013.