JOINT NORTH SOUTH RARE DISEASE DAY CONFERENCE
Event Information
Event description
Let's "Reframe Rare"! Come along to find out what progress has been made; to learn what is going on; and to shape what happens next!
About this Event
THE DAY IN OUTLINE:
- 9.15 to 10.12
Doors Open; Registration
Tea/Coffee/Scones
Morning Session
- Welcome and Opening: Rhoda Walker, NIRDP and Vikky McGrath, Rare Disease Ireland
- Update on Rare Disease Strategies and Actions: What has happened? What next? A Panel discussion with Senior representatives from North and South
Comfort Break
- Patient Data: Rare Disease Registries and ENCOMPASS
- Let's play the "The Play Decide" Game: An interactive game, facilitated throughout, which allows mixed audience to engage with the topic of Patient Data from different perspectives: Help inform the development of e health systems
LUNCH BREAK
Including finger buffet and Cake; a showing of “The Patient Effect” Film; video clips of patient and family experience from North and South; and lots of information and networking
Afternoon Session
- What a difference a Genome Makes!
- Launch of RariTea 2020/ Presentation of Prizes
3.30
- Close
