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The Genetic and Rare Disorders Organisation (GRDO) is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders. Read more ...

Rare Disease Day 2013

An All Ireland meeting of patient organisation, science and industry to mark International Rare Disease Day and the Irish Presidency of the Council of European Union was held in City Hall Dublin on 28th of February. The theme was Rare Disorders without Borders and was organised by the Rare Disease Taskforce, bringing together GRDO, Irish Platform for Patient Organisation Science and Industry (IPPOSI) &the Medical Research Charities Group (MRCG), along with our Northern Irish counterparts the Northern Irish Rare Disease Partnership (NIRDP) and Rare Disesase UK. This was in fitting with the cross border theme of the event to promote innovation and co-operation in the field of rare disease between Ireland and the UK, north and south, east and west and accross the EU. IPPOSI were the leading partners in organising and co-ordinating this event and a big acknowlegement to them.

A webcasting of the event is available online, to view click here
Official Rare Disorders without Borders video, to view click here
Patient perspective video, to view click here
Posters on show at the event, to view click here
Photostream of the event, to view click here

An Easy Guide for Rare Disease was also launched at the event and has been produced to raise awareness about the challenges of living with a rare disease through patient stories and to highlight the priorities that need to included in the forthcoming National Plan for rare Disease (NPRD). To read more, click here

National Rare Disease Plan Consultation


On Monday, 11 June 2012,  the Department of Health's Consultation Day on the National Rare Disease Plan took place at Farmleigh House in Dublin.  An online consultation process was also launched, offering all those affected the opportunity to contribute to the formation of the plan. As one of the partners involved in the Department of Health's Rare Diseases Consultation at Farmliegh on the 11th of June 2012, the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) has made available this video recording of the speech given by the Minister for Health Dr James Reilly and the presentations made by Sub-group Chairs; Eibhlin Mulroe, GRDO Chair Avril Daly, Tony Heffernan and Helen McAvoy. 

To read more about the consultation event at Farmleigh - click here Consultation_2012

Rare Disease Day 2012

A new promotional video for Rare Disease Day 2012, which GRDO helped co-ordinate in Dublin, features six people from Ireland, each with a different rare condition.


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