Joint North South Rare Disease Day 2017/Foyle and North West Rare Disease Forum

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

13.10pm Discussion

 13.30pm: Lunch

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

15.35pm Discussion

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.

This entry was posted in Events. Bookmark the permalink.

Leave a Reply