


We are busy finalising the Programme for this, the Fourth Joint North South Rare Disease Conference. There are still some details to sort out, but see below for the latest version.
Programme
09.00 – 10.15 REGISTRATION AND COFFEE
10.15 – 10.30 Welcome and Introductions
Fiona McLaughlin, Chair NIRDP & Philip Watt, Chair MRCG
10.30 – 10.45 “Nothing about us without us”
Les Allamby, Chief Commissioner, NIHRC
10.45 – 11.30 Rare Disease and the Strategies
Dr Michael McBride, Chief Medical Officer, DoH (NI)
Another Speaker TBC
11.30 – 12.30 Participating in Research
Dr Maurice O’Kane, NI Clinical Research Network
Dr Claire Lundy, Regional Paediatric Neurodisability Service
Another Speaker TBC
12.30 – 13.30 LUNCH
Poster Competition: “Nothing About Us Without Us” (see below)
Side Event – Northern Ireland Human Rights Commission
13.30 – 14.15 Panel Discussion – BUILDING CAPACITY
Chair – Mary Hinds, PHA
Panellists to include: Derrick Mitchell, IPPOSI; Gemma McKillen, EUPATI; Julie Power, VIA,
14.15 – 15.15 WHAT DOES SUCCESS LOOK LIKE?
100k Genomes Programme – Dr AJ McKnight
The 22 Q Journey: Anne Lawlor, Chairperson 22q11 Ireland Support Group; Dr Tabib Dabir, BHSCT; Gillian Cassidy, 22Q Support Group Dr Mary Dallas, PHA
22 Q Video
15.15 – 15.30 COFFEE BREAK
15.30 – 16.15 Panel Discussion – BEYOND THE STRATEGIES: NEXT STEPS
Chair – Professor Ian Young
Dr Avril Kennan, MRCG
Philip Watt, MRCG
Anne Lawlor, Chairperson 22q11 Ireland Support Group
2 Members TBC
16.15 – 16.30 PRESENTATION OF POSTER COMPETION PRIZES & NIRDP AWARDS
Fiona McLaughlin, Philip Watt & Professor Ian Young
16.30 CLOSE – Philip Watt
Register NOW to be sure of your place!
Note: There is a Poster Competition: the Topic, is “Nothing about us without us” tying in with the Rare Disease Day Theme of “Research: Patients are not only subjects but also proactive actors in research”https://www.rarediseaseday.org/page/news/the-theme-for-rare-disease-day-2018-is
The Competition (with prizes!) aims to showcase examples of research, academic, clinical, social where patients and families were engaged and involved; what difference it made; and what is happening now and into the future. So if you or your organisation have worked with rare disease patients, families and carers to do any research, surveys, etc which are being used or could be used to influence and shape treatments, care and services for people with rare disease, send a short abstract to rarediseaseday2018@health-ni.gov.uk , with POSTER COMPETITION in the Subject line, by Friday 23 February. Posters must be A0 size Portrait, and brought to Riddell Hall on the day by 9.00am on 5 March 2018 for display.