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