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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
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.
Latest news
Rare Disease Day view online, 1 March 2013 - click hereRare Disease Day Posters view, 1 March 2013 - click here
Rare Disease Day Patient Video, 1 March 2013 - click here
Eurordis Rare Disease Video, 11 February 2013 - click here
Staffing of Medical Genetic Centres in Europe, 4 February 2013 - click here
NCMG 5 year report, 4 February 2013 - click here
Rare Disease Day 2013 28th of Feburary, Registration now open - click here
Epirare Survey on rare disease patient registries, 14 January 2013 - click here
IPPOSI launches information campaign on clinical trials, 17 September 2012 - click here
GRDO issues joint statement on cutbacks to disability services, 17 September 2012 - click here
GRDO seeks information from patient organisations re cross border working, 11 September 2012 - click here
Video highlights of National Rare Disease Plan Consultation Event at Farmleigh available, 7 August 2012 - click here
Third edition of the quarterly e-newsletter published by the Rare Diseases Taskforce: 'Rare Diseases News', April-June 2012, now available - click here
Share your views and inform the first Rare Disease Plan for Ireland, 11 June 2012 - click here
Crisis in medical genetics services impacts those affected by rare disease, 11 June 2012 - click here
GRDO Chair Avril Daly elected Vice President of EURORDIS, 29 May 2012 - click here
6th European Conference on Rare Diseases and Orphan Products, 23-25 May 2012 - click here
11 June Consultation Day on National Rare Disease Plan, 30 April 2012 - click here
HRB hosts workshop on rare disease research in Ireland, 26 March 2012 - click here
GRDO welcomes commitment to develop clinical care programme for rare diseases, 7 March 2012 - click here
Seanad debate on rare disease, 7 March 2012 - click here
GRDO addresses Joint Oireachtas Committee, 29 February 2012 - view here
GRDO survey highlights need for National Rare Disease Office, 28 February 2012 - click here
Promotional video for Rare Disease Day 2012 launched, 13 February 2012, featuring six people with rare conditions in Ireland - click here
Please complete our survey, launched, 20 December 2011: Rare Disease in Ireland – Your Experience - click here
Rare Disesase Day 2012 website launched, 20 December 2011 - click here
Second edition of the quarterly e-newsletter published by the Rare Diseases Taskforce: 'Rare Diseases News', Jan-Mar 2012, now available - click here
GRDO Patient Organisation Survey launched, 5 December 2011 - click here
First edition of the quarterly e-newsletter published by the Rare Diseases Taskforce: 'Rare Diseases News', Oct-Dec 2011, now available - click here
GRDO appoints Information and Development Officer, 24 October 2011. More information - click here
Report on event hosted by GRDO for International Rare Disease Day, 28 February 2011 - click here
Europlan Ireland Conference 20 January 2011: information and podcasts - click here
Newsletter 2011-2012 - click here
Newsletter 2010 - click here
Newsletter 2009 - click here
Newsletter 2008 - click here