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International Rare Disease Day 2017: Joint North South Conference
Tue 28 February 2017, 09:30 – 16:30 GMT
International Rare Disease Day 2017! And a Joint North/South event, in the gracious surroundings of the Royal Hospital, Military Road, Kilmainham, Dublin 8
The Rare Disease Day Theme is "Research brings hope to people living with a rare disease"
We will be exploring this, bringing together researchers, clinicians, policy makers, elected representatives and patients and carers from across Ireland (North and South) to see how we can work together, with the rare disease and research communities across the world, to bring hope to all those living with a rare disease.
Register now: see the Programme below
The venue in the Royal Hospital Kilmainham is very accessible; and the nearby Hilton Hotel is an option for an overnight stay.
Joint North South Rare Disease Day Conference 28 February 2017
9.45am: Registration, Tea and Coffee
Theme 1: Updates, Progress and Gaps
10.30am Welcome and opening remarks: Philip Watt, Chairperson, Rare Disease Taskforce
10.45am Opening Address: Mark Pollock
11.00am Update on progress on Rare Diseases in Northern Ireland: Professor Ian Young
11.20am Progress at a European level: Professor Eileen Treacy
11.40am: Tea/Coffee Break and Networking Opportunity
Theme 2: Accessing New and Innovative Medicines: The Needs and the Challenges
Chaired by: Derick Mitchell, IPPOSI
12.10pm Rare lung diseases - opportunities and challenges: Professor Gerry McElvaney
12.30pm A pharmacoeconomics perspective: Professor Michael Barry NCPE
12.50pm Patient group perspective: Michael Griffith and Dermot Devlin
Theme 3: The role of Genomics and Research in Rare Diseases
Chaired by: Fiona McLoughlin, Chairperson, NI Rare Disease Partnership
14.15pm 22Q11: A North/South patient group perspective: Gillian Cassidy and Anne Lawlor
14.35pm The Patient Journey – Living with a Genetic Diagnosis: Rose Kelly and Anne Lennon Bird
14:55pm The role and potential of genomics in tackling rare diseases: Dr Sean Ennis
15:15pm Cheryl Flanagan: Northern Ireland Genomic Medicine Centre
15.55pm Concluding Remarks: Avril Daly, GRDO
The National Rare Disease Office team will be on hand on the day to showcase the Orphanet system throughout the day.