Rare Disease Day 2016 is a wordwide event. The main objective is to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare disease. In Ireland, this event is organised by the 3 umbrella groups - MRCG (Medical Research Charities Group), GRDO (Genetic and Rare Disorders Organisation and IPPOSI (Irish Platform for Patient Organisations, Science and Industry). The theme for Rare Disease Day 2016 is The Patient Voice.

If you wish to read some background information, the Rare Disease National Plan for Ireland can be found here

The European Expert Group on Rare Diseases Recommendations for Core Indicators for Rare Disease National Plans can be found here

Agenda for Rare Disease Day 2016

9am: Registration

Tea/Coffee

Session 1: Chair: Philip Watt, Chair of the Rare Disease Task Force

9:30am Welcome and introduction

9:45am Rachel Martin, Marfan Syndrome Support Group Ireland

10am Dr John Devlin, Chair of Rare Disease Steering Group

10:10am Prof Eileen Treacy, Clinical Director, National Clinical Programme for Rare Diseases

10:20am Rita Marron, National Rare Disease Office

10:30am Dr Derick Mitchell, CEO, IPPOSI

10:40am Panel Discussion and Q&A – Chair Eibhlín Mulroe, CEO, ICORG

Implementation of National Rare Disease Plan

11am Break

Session 2: Chair Avril Daly, Vice-President, EURORDIS

11:30am Introduction

11:40am Richard Corbridge, Chief Information Officer, HSE

11:55am Dr Kevin Mitchell, Senior Lecturer in Genetics, Trinity College Dublin

12:10pm Ms Eilish Hardiman, CEO Children's Hospital Group

12:25pm Denis Costello, Web Communications Senior Manager & RareConnect Leader, EURORDIS

12:40pm Dr Liam Farrell, Columnist and Broadcaster

12:55pm Closing remarks

1pm Close