Free

Joint North South Rare Disease Conference 2018

Event Information

Share this event

Date and Time

Location

Location

Riddel Hall, QUB

185 Stranmillis Road

Belfast

BT9 5EE

United Kingdom

View Map

Event description

Description

Join us for the fourth Joint North South Rare Disease Conference, to celebrate International Rare Disease Day and to share news, ideas and information on rare disease issues.

Co chaired by NIRDP's Fiona McLaughlin and MRCG Ireland's Philip Watt, the programme Themes are:

  • Rare Disease and the Strategies

  • Expert Patients: Engaging with Research: EUPATI UK and RoI

  • Patients and Researchers

  • Beyond the 2016 to 2020 Strategies: Next Steps

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 - 11.15 RARE DISEASE AND THE STRATEGIES

Dr Michael McBride, Chief Medical Officer, DoH

Another Speaker TBC

11.15 - 12.15 PARTICIPATING IN RESEARCH

Dr Maurice O’Kane, NI Clinical Research Network

Dr Claire Lundy, Regional Paediatric Neurodisability Service

Dr Sean Ennis, Director, ACoRD, UCD

12.15 - 13.30 LUNCH

POSTER COMPETITION (See further details below)

“Nothing About Us Without Us”

Lunchtime Side Event - Northern Ireland Human Rights Commission

13.30 - 14.15 Panel Discussion - BUILDING CAPACITY

Chair - Mary Hinds, PHA

Panel - Martin Quinn, Regional PPI, PHA, Dr Derick Mitchell, IPPOSI, Julie Power, NIRDP

14.15 - 15.15 WHAT DOES SUCCESS LOOK LIKE?

100k Genomes Programme – Dr AJ McKnight, Rare Disease Lead for 100K Genomes

Program

The 22 Q Journey

Video

Dr Tabib Dabir, BHSCT; Dr Mary Dallat, PHA; Gillian Cassidy, Founder 22q Support

Group Northern Ireland

Anne Lawlor, Chairperson 22q11 Ireland Support Group;

Video

15.15 - 15.30 COFFEE BREAK

15.30 - 16.15 Panel Discussion - BEYOND THE 2016 TO 2020 STRATEGIES: NEXT STEPS

Chair – Jackie Johnston, Acting Deputy Secretary, Department of Health

Dr Avril Kennan, MRCG

Philip Watt, MRCG

Anne Lawlor, Chairperson 22q11 Ireland Support Group

Dr Mark Taylor, BHSCT

Dr. Michael Quinn, ENCOMPASS Clinical Director

16.15 - 16.30 PRESENTATION OF POSTER COMPETION PRIZES & NIRDP AWARDS

Fiona McLaughlin, Philip Watt

16.30 CLOSE – Philip Watt

Poster Competition

Call for abstracts – Poster competition under the following categories:

- Clinical / Laboratory investigations for Rare Diseases;

- Epidemiology and Big Data contributing to Rare Disease Research;

- Social Science considerations for Rare Diseases; and

- Improving Education for Rare Diseases

The Joint North South Rare Disease Conference 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research. The topic for the meeting is ‘Nothing about us without us’ and aims to showcase examples of research; academic, clinical, and social, particularly where patients and families were engaged and involved; what difference it made; and what is happening now and into the future.

Abstracts (maximum 200 words, not including title and authors) should be emailed to julie.mcmullan@qub.ac.uk, with ‘POSTER COMPETITION’ in the subject line, by Monday 26th February 2018. Posters must be A0 size in Portrait format, and brought to Riddel Hall by 9.00am on 5 March 2018 for display.

A prize of £50 will be awarded to the winning entries in each category and a certificate given to each participant.

Share with friends

Date and Time

Location

Riddel Hall, QUB

185 Stranmillis Road

Belfast

BT9 5EE

United Kingdom

View Map

Save This Event

Event Saved