A unique partnership of Patients' Organisations, Science and Industry on the island of Ireland.IPPOSI provides a structured way of facilitating interaction between these three key membership groups and where possible with State Agencies on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs in Ireland. Read more...
An Easy Guide to Rare Diseases has been produced to increase awareness about the challenges of living with a rare disease and to highlight the priorities that need to be included in the forthcoming National Plan for Rare Diseases (NPRD) in Ireland.
Launched by Minister Alex White on Rare disease Day 2013, it aims to explain what a rare disease is; to highlight the challenge of living with a rare disease in Ireland through patient profiles; to Identify priorities that should be included in the National Plan for Rare Diseases in Ireland and to contribute to the development of a National Clinical Programme on rare diseases in Ireland
So Rare Disease Day is over for another year but the work continues. After more than 200 people attending our conference in City Hall, we are now asking those who attended to continue the debate.
You can review the posters which were submitted to our poster call. The first prize went to Dr Paula Byrne UCD –Teaching Medical Students about Rare Disease. Second prize went to Motor Neurone Disease Association-New Patient Charter and the most engaging poster prize went to Michael Holden-Tripability.
Finally you can view all the photos from the conference on our photostream.
In the coming weeks we will also publish an Outcome Report bringing together the contributions made by speakers and delegates and identifying the main areas of consensus.
ABOUT THE CONFERENCE
Rare Disorder Without Borders was an all-Ireland conference which took place in Dublin City Hall on the 28th of February 2013 to mark Rare Disease Day, the internationally recognised day for rare diseases. The conference was coordinated by the Rare Disease Task
Force in Ireland which brings together the Genetic and Rare Disorders Organisation GRDO, the Irish Platform for Patients’ Organisations, Science and Industry IPPOSI and the Medical Research Charity Group MRCG in partnership with the Northern Ireland Rare Disease Partnership NIRDP and Rare Disease UK.
In line with the theme Rare Disorders Without Borders, the conference promoted collaborative and innovative ways of working between Ireland and the UK, north and south, east and west and across the EU in the field of rare diseases. The conference took place in Dublin to coincide with the Irish Presidency of the Council of the EU, fitting given this year’s deadline for the development of national plans for rare diseases in the EU.
As one of the partners involved in the Department of Health's Rare Diseases Consultation at Farmliegh on the 11th of June 2012, IPPOSI has now made available a video recording of the speech given by the Minister for Health Dr James Reilly and the presentations made by Sub-group Chairs; Eibhlin Mulroe, Avril Daly, Tony Heffernan and Helen McAvoy. You can view all the videos below or on IPPOSI's you tube channel
Did you know? It is estimated that between 5000 and 8000 rare diseases exist globally today affecting 6 to 8% of the population in the course of their lives.Work done in the past few years at European level in the field of rare diseases, and the experience of those countries where public health initiatives for rare diseases exist, show that a specific national approach and European collaboration can improve health and social care for people with rare diseases.
The European Project for Rare Diseases National Plans Development (EUROPLAN), developed as part of the Programme of Community action in the field of Public Health, developed resources to support establishment and implementation of National Plans in the field of rare diseases. Plans or strategies are recommended to be established by the end of 2013. Health authorities of 27 EU member states, including Ireland and the UK, have signed a document stating their willingness to fulfil this deadline.
IPPOSI is working with the Department of Health to support the work of the Steering Group on a National Rare Diseases Strategy, which was first convened in May 2011. IPPOSI CEO Eibhlin Mulroe is a member of the Steering Group and IPPOSI has supported the Steering Groups recentconsultation process which took place in Farmliegh House in June 2012.
IPPOSI has made available a video recording of the speech given by the Minister for Health Dr James Reilly and the presentations made by Sub-group Chairs; Eibhlin Mulroe, Avril Daly, Tony Heffernan and Helen McAvoy. You can view all the videos on IPPOSI's you tube channel
Members of the National Rare Diseases Steering Group -
Prof Eileen Treacy, Health Service Executive, Ms. Caroline Kelly, Department of Health, Mr John McCormack, The Medical Research Charities Group, Ms Eibhlín Mulroe, The Irish Platform for Patients’ Organisations Science and Industry, Mr Tony Heffernan, Patient Representative (Bee for Battens, Dr Helen McAvoy, Institute of Public Health in Ireland. Minister of Health, Dr James Reilly TD, Ms Avril Daly, The Genetics Rare Disorders Organisation, Mr Owen Metcalfe, Institute of Public Health in Ireland, Dr John Devlin (Chair), Department of Health, Mr Shaun Flanagan, Health Service Executive, Dr Catherine Gill, Health Research Board.
On Monday the 11th of June, 2012 at 10am, the Department of Health's Consultation Day on a National Rare Disease Plan for Ireland took place at Farmleigh House in the Phoenix Park. This event followed the Minister for Health, Dr James Reilly's decision last April to appoint a National Rare Diseases Steering Group in order to develop a national plan for rare diseases. Similar plans are being drafted across the EU following a recommendation by the European Council of Health Ministers which requires Member States to implement national plans before the end of 2013.Speaking in advance of the event Mr. John McCormack, Chairman of the Taskforce for Rare Diseases and of the Medical Research Charities Group (MRCG) said "Much work has been done to ensure this plan will meet the needs of people with rare diseases and I welcome the level of engagement which the Department has had with patients' organisations thus far. In particular the launch of the online consultation process offers people with a rare disease and their families the opportunity to contribute to the formation of the plan." The online consultation process will last for four weeks and can be accessed by visiting http://www.hse.ie/eng/services/ysys/Consultation
Eibhlin Mulroe a member of the Steering Group and CEO of The Irish Platform for Patients' Organisation, Science and Industry (IPPOSI) said "the move to include a patients perspective in the process recognises the level of expertise which patients have and their willingness to engage with all the stakeholders. It is good to see that the efforts of the many groups concerned with supporting the individuals and families affected by a rare disease in Ireland and the EU is starting to come to fruition. Establishing and implementing a National Plan for Rare Disease will start to address the marginalisation, frustration and often despair experienced by patients and families of rare diseases."
EVENT HOSTED BY HRB ON BEHALF OF THE NATIONAL STEERING GROUP ON A RARE DISEASE PLAN FOR IRELAND
Monday, 26 March 2012 from 09:30 to 13:30 (GMT)
Dublin 2, Ireland
The workshop will bring together National and International speakers and Irish researchers. Keynote presentations on the elements involved in successful research in the area of rare disease will be followed by a panel discussion on the barriers, solutions and opportunities in rare disease research.
This meeting will provide an excellent opportunity to input to planning for the future of rare disease research in Ireland and, very importantly, will inform deliberations in the area of research for the forthcoming Irish National Plan for Rare Diseases (see details in 'Hosted by' box to the right). We hope that this will be a highly informative event, providing a much needed overview on how Ireland can move forward in the area of rare disease research and participate at an international level.
So Rare Disease Day is over for another year but the work continues. After more than 200 people attending our conference in City Hall, we are now asking those who attended to continue the debate.
