Joint North South Rare Disease Conference: 5 March 2018

 

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.

 

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