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Rare Disorders without Borders, An All-Ireland meeting to mark International Rare Disease Day 2013

Rare Disorders Without Borders. Coordinated by those organisations that bring together patient groups associated with rare diseases on the island of Ireland.

Thursday, 28 February 2013 from 08:00 to 13:30 (GMT)

Rare Disorders without Borders, An All-Ireland meeting...

Registration Information

Type End Quantity
Northern Ireland Patient or Group
Please select these tickets if you are a patient or working with a Patients' Organisation from Northern Ireland. Max two tickets per group
Ended Free  
Republic of Ireland Patient or Group
Please select these tickets if you are a patient or working with a Patients' Organisation from Rep of Ireland. Max two tickets per group
Ended Free  
Working in Industry
Please select these tickets if you are an Industry member of a coordinating organisation
Ended Free  
Working in Science
Please select these tickets if you are involved in research connected with rare diseases. Max two tickets per organisation
Ended Free  
Working in Government / Agency
Please select these tickets if you work in the administration or delivery of healthcare to patients with rare diseases or if you are involved in the framing of policy in his area
Ended Free  
Other Ended Free  

Event Details

The Organising Committee of Rare Disorders Without Borders are pleased to publish the Delegate Programme for this All-Ireland conference which will mark International Rare Disease Day and the Irish Presidency of the Council of the Europpean Union.

Download the programme to see a full list of speakers and details of each session.
 

VENUE CHANGE 
We have had a huge demand for places at this year’s Rare Disease Day event, Rare Disorders Without Borders,  In response to this we approached our venue sponsor Dublin City Council and they have kindly offered us Dublin City Hall an alternative venue to accommodate 200 delegates.

The event will now take place at 9am (registration from 8am) on the same date the 28th of February at Dublin City Hall, Dame Street, Dublin 2.  The event will not be held at the Wood Quay Venue. Please note this change in your diary.


EVENT DETAILS
At 9am on the 28th February, 2013 at Dublin City Hall,  an all-Ireland meeting of patients’ organisations will be held to mark International Rare Disease Day and the Irish Presidency of the Council of the European Union.
 
The conference is being coordinated by those organisations that bring together all the patient groups associated with rare diseases on the island of Ireland. These are the Northern Ireland Rare Disease Partnership (NIRDP), Rare Disease UK and The Rae Disease Task Force 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 line with the theme Rare Disorders without Borders, the conference will promote collaboration and innovative ways of working between Ireland, north and the south in the field of rare diseases. The conference will take place in Dublin to coincide with the Irish Presidency of the European Council of the EU, fitting given the background to the ongoing development of national
plans for rare diseases in the EU.
 

8.00 - 9.00 REGISTRATION
 

9.00 - 10.20 THE NEXT STEPS FOR RARE DISEASES

CHAIR: PHILIP WATT, CHAIRPERSON, RARE DISEASE TASKFORCE AND MEDICAL RESEARCH CHARITIES GROUP


Expert speakers will discuss the current policy context affecting those with rare diseases. In particular they will outline the provisions of the EU’s Cross Border Healthcare Directive which provides clarity about the rights of patients who seek healthcare in another member state. Speakers include;

Ms Avril Daly, Vice President EURORDIS, Chairperson Genetic and Rare Disorders Organisation

Mr John Rowan, European Commission, Healthcare Systems Unit,SANCO D2

Prof Kate Bushby, Professor of Neuromuscular Genetics, Newcastle University, Vice-Chair of the European Union Committee of Experts on Rare Diseases

Minister Edwin Poots MLA, Minister of the Department of Health, Social Services and Public Safety in the Northern Ireland Executive

Minister Alex White TD, Minister of State for Primary Care at the Department of Health in the Irish Government.


10.20-10.45 COFFEE


10.45 - 11.35 MAKING CROSS BORDER COLLABORATION WORK

CHAIR: EIBHLIN MULROE, CEO, IRISH PLATFORM FOR PATIENTS’ ORGANISATIONS SCIENCE AND INDUSTRY

By inviting questions from the floor, this session will take the form of an interactive discussion and will address the opportunities for collaborative working and highlight the needs of rare disease patients.


Mr Rowan and Prof Kate Bushby from session one will join a panel with;

Prof Eileen Treacy, National Centre for Inherited Metabolic Disorders
Dr Sally Ann Lynch, National Centre for Medical Genetics
Ms Fiona McLaughlin, Progressive Supra Nuclear Palsy Association
Ms Rosie O Shea, Genetic and Rare Disorders Organisation

11.35 - 12.20 SHOWCASING EXAMPLES OF CROSS BORDER CARE ON THE ISLAND OF IRELAND

CHAIR: ALASTAIR KENT, CHAIRPERSON RARE DISEASE UK


Speakers in this session will showcase existing cross border programmes and provide an opportunity to identify best practice and disseminate information to other patient organisations and rare disease patients.

Ms Paddie Blaney, All Ireland Institute of Hospice and Palliative Care

Ms Sadie Bergin, Cooperation And Working Together (CAWT) the cross border health and social care partnership

Ms Katie Rigg, Multiple System Atrophy Trust, and Ms Rosemary Arbuthnot, Northern Ireland Rare Disease Partnership


12.20 - 12.40 CONCLUSIONS AND CLOSE

CHAIR: CHRISTINE COLLINS, CHAIRPERSON

NORTHERN IRELAND RARE DISEASE PARTNERSHIP


12.40 - 14.00  LUNCH

 

Do you have questions about Rare Disorders without Borders, An All-Ireland meeting to mark International Rare Disease Day 2013? Contact Rare Disorders Without Borders. Coordinated by those organisations that bring together patient groups associated with rare diseases on the island of Ireland.

When & Where


Dublin City Hall
Dame Street
Dublin
Ireland

Thursday, 28 February 2013 from 08:00 to 13:30 (GMT)


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Organiser

Rare Disorders Without Borders. Coordinated by those organisations that bring together patient groups associated with rare diseases on the island of Ireland.

The Northern Ireland Rare Disease Partnership (NIRDP), Rare Disease UK and The Rare Disease Task Force 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).

  Contact the Organiser
Rare Disorders without Borders, An All-Ireland meeting to mark International Rare Disease Day 2013
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