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Rare Disorders Without Disorders without borders Programme Outline.pdf · PDF file Without Borders An all-Ireland meeting of patients’ organisations, science and industry to mark

Aug 08, 2020




  • Rare Disorders Without Borders

    An all-Ireland 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 9am to 3pm

    Wood Quay Venue Civic Offices, Dublin 2.

  • Background An all-Ireland conference will take place in Dublin on the 28

    th of

    February 2013 to mark Rare Disease Day, the internationally recognised day for rare diseases. The conference is being coordinated by those organisations that bring together all the 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)). In line with the theme Rare Disorders Without Borders, the conference will promote collaboration and innovative ways of working between Ireland and the UK, north and south, east and west 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 the deadline for the development of national plans for rare diseases in the EU by 2013. Registration There is no charge to attend this conference but registration is required. To ensure all stakeholder groups are represented places are limited to two per organisation, Register online at; or contact us by email to [email protected] or telephone 01-4071629.

  • Session 1 The Next Steps for Rare Diseases

    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 have already been confirmed from the European Commission, the Northern Ireland Executive and EURORDIS.

    Session 2 Making Cross Border Collaboration Work

    This session will take the form of an interactive discussion and will address the opportunities for collaborative working in rare diseases. The panel will include representatives from Patients’ Organisations and leaders from bodies such as; the Northern Ireland Health and Social Care Board, the Northern Ireland Public Health Agency, the Republic of Ireland’s Department of Health and Health Service Executive and the European Commission.

    Session 3 Showcasing examples of cross border care on the island of Ireland

    Existing cross border programmes will be discussed, providing an opportunity to identify best practise and to disseminate information to other patient organisations and rare disease patients.

    PROGRAMME OUTLINE A full list of speakers will be announced at a later date.


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