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JOINT NORTH SOUTH RARE DISEASE DAY CONFERENCE

Feb

28

JOINT NORTH SOUTH RARE DISEASE DAY CONFERENCE

by Northern Ireland Rare Disease Partnership

Actions and Detail Panel

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Date and time

Fri, 28 February 2020

09:15 – 15:30 GMT

Location

Lecture Room 1, Riddel Hall

185 Stranmillis Road

Belfast

BT9 5EE

United Kingdom

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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

Tags

  • United Kingdom Events
  • Belfast Events
  • Things to do in Belfast
  • Belfast Conferences
  • Belfast Health Conferences
  • #research
  • #strongertogether
  • #rare_disease
Event ended

JOINT NORTH SOUTH RARE DISEASE DAY CONFERENCE


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Northern Ireland Rare Disease Partnership

Event creator

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