AGENDA

09:15am Registration & Tea/Coffee

10:00am Welcome Address

Vicky McGrath - Chief Executive, Rare Diseases Ireland

10:10am Setting the Scene - A Parent's Story

Alan Finglas - MSD Action Foundation

10:20am Session 1: Update on Rare Disease Plans

Key speakers from North and South of the border will provide an update on how the rare diseases plans are progressing, and where people living with a rare disease and the rare disease community wish to see an increased focus in forthcoming national rare disease plans.

11am Coffee Break

11:20am Session 2: Patient Experience of Health and Social Services

The patient perspective in Northern Ireland will be provided by the 10,000 Voices Campaign, while the HSE’s Your Voice Matters Campaign will shed light on patient experiences of health and social services in the Republic. This session will also include a patient case study that describes one organisation’s efforts to identify how best to access co-ordinated services on behalf of its members.

12:20 pm Session 3: Panel Discussion

Session Chair: Avril Daly - Chairperson, Rare Diseases Ireland; Vice President, EURORDIS - the European Rare Disease Organisation; CEO, Retina International

The closing session will feature patient and service-provider representatives debating the strengths and weaknesses of co-ordinated health and social services in Ireland.

1pm Event Close

A good day was had by our NI contingent at this event.