Event

28 Feb 2020
When:
Fri 28 February, 2020
Location
185 Stranmillis Road, Belfast, BT9 5EE, United Kingdom
Belfast
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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

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

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