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Spotlight on Parent Involvement in Research for Children with Congenital Anomalies

This event has ended

Date
Time
10:00 to 14:15
Location
Jordanstown campus

8H08
Organiser
Professor Marlene Sinclair
Contact details
+44 28 9036 8118
m.sinclair1@ulster.ac.uk
Register

The Doctoral Midwifery Research Society, Ulster University Centre for Maternal, Fetal and Infant Research and EUROlinkCAT are holding this event in recognition of the 4th annual World Birth Defects Day to present current evidence on how parents who have children with congenital anomalies can work in partnership with professionals to share and undertake meaningful and relevant research.

The event is free and open to all, and members of the public who are interested in learning about parents involvement in research and parent-led networking. Down Syndrome will be the central focus of the seminar this year.

**Places are limited to 25 in the room but we are delighted to be able offer online access to the event. Please register early to avoid disappointment**

10.00-10.20am

Registration

Dial in\Access live stream

 

10.20-10.30am

Professor Marlene Sinclair

Welcome and Introduction

10.30-11.20am

Professor Roy McConkey

Parents and professionals working in partnership to tackle relevant research issues

11.20-12 noon

Professor Anna Latos-Bieleńska

A consultant geneticist’s story of working with parents and young people who have  Down syndrome in Poland

12 noon-12.50pm

 

Lunch Intermission

12.50-1.05pm

Mr Jarek Pieniak

A personal story of one parent’s journey to creating an online support network for parents who have children with Down Syndrome

1.05-1.15pm

Dr Bernie Reid

Focus Group research outcomes from mothers who have children with Down syndrome

1.15-1.40pm

Dr Dympna Walsh Gallagher

Doing sensitive research with pregnant mothers who have a disability

1.40-2.10pm

Professor Marlene Sinclair/ Dr David Elliott /Dr Julie McCullough

EUROlinkCAT ConnectEPeople Research Project

Register