Rare Disease Day Dublin Feb 2013

RARE DISORDERS without Borders RELAND MEETING OF PATIENTS’ ORGANISATIONS, SCIENCE AND INDUSTRY TO MARK INTERNATIONAL RARE DISEASE DAY AND THE IRISH PRESIDENCY OF THE COUNCIL OF THE EUROPEAN UNION 28TH FEBRUARY, 2013 8AM TO 2PM DUBLIN CITY HALL

BACKGROUND An all-Ireland conference will take 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 is being 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 along with the Northern Ireland Rare Disease Partnership NIRDP and Rare Disease UK. In line with the theme Rare Disorders Without Borders, the conference will promote 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 will take 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.

AGENDA 8.00 - 9.00 9.00 - 10.20 REGISTRATION 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
  

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