JOINT NORTH SOUTH RARE DISEASE DAY CONFERENCE
28 February 2020
185 Stranmillis Road, Belfast, BT9 5EE, United Kingdom, Belfast
Hosted by Northern Ireland Rare Disease Partnership
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
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
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
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
What a difference a Genome Makes!
Launch of RariTea 2020/ Presentation of Prizes