Paving The Way To The Publication Of Ireland’s First National Rare Disease Plan

Here are some significant milestones from amongst the many meetings and steady work of everyone involved, paving the way to the publication of Ireland’s first National Rare Disease Plan. We are proud to have been part of the journey and the establishment of key organisations involved in developing the plan and we look forward to its implementation.

1983: Fighting Blindness (FB) established.

1988: Genetics and Rare Disease Organisation (GRDO) established.

1994: GRDO successfully lobbies for a dedicated National Centre for Medical Genetics at Our Lady’s Hospital, Crumlin.

1997: European Organisation for Rare Diseases (EURORDIS) established.

1998: Medical Research Charities Group (MRCG) established.

2001: Irish Platform for Patient Organisations, Science and Industry (IPPOSI) established.

2008: First European Awareness Day: A Rare Day for Rare Diseases takes place on leap day

2009: European Council supports the adoption of national strategies for rare diseases before 2013.

A multi-stakeholder committee is established to develop the Irish Europlan event to facilitate the development of an Irish plan.

2011: Europlan conference attended by 140 people to address main pillars of national plan, identify gaps and discuss best practice. Minister for Health establishes National Steering Group to develop policy framework for diagnosis, prevention and treatment of rare diseases in Ireland, in line with EU recommendations. Rare Diseases Taskforce established to inform the work of the Steering Group, bringing together patient advocacy organisations including GRDO, IPPOSI and MRCG, in addition to patient representatives.

2012: GRDO calls for the establishment of a National Rare Disease Office and addresses Joint Oireachteas Committee on Health and Children.

Seanad Debate at which Minister for Health makes commitment to develop clinical care programme.

Health Research Board hosts workshop on rare disease research, providing opportunity to input into future planning for Irish rare disease research.

Department of Health holds Consultation Day on National Rare Disease Plan, addressed by Minister for Health. Response is one of the largest ever received for a public consultation in an area of health.

2014: Minister for Health launches the National Rare Disease Plan for Ireland 2014 – 2018.