This year, we are celebrating Rare Disease Day on 28 February jointly with our counterparts in the South, The Rare Disease Taskforce- in the palatial surroundings of the Royal Hospital Kilmainham, from 9.45 to 4 pm: see the impressive Programme below.
Please Register here:
Meanwhile from 11.30 to 12.30 the Mayor of Derry, Alderman Hilary McClintock, kindly is hosting a Reception in the gracious surroundings of the Whittaker Suite, Guildhall,Derry/Londonderry, to celebrate the Day! Everyone is welcome at this informal event, to hear about what is happening around research into rare disease, and how to have your say on improving the systems for preventing, treating and living with rare conditions.
Please register now to receive an invitation
The Programme for the Kilmainham event is here:
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.