Burden of Rare Diseases In Ireland
Event Information
Event description
Evidence is a key element of any advocacy campaign - learn about recent Rare Disease research in Ireland.
About this Event
Data speaks - a picture says a thousand words!
- What is the burden of rare diseases in Ireland?
- How do rare diseases affect the lives of our children?
- What is the impact of living with a rare disease on the affected individual and their family?
There are many unanswered questions associated with living with a rare disease in Ireland:
- Learn how recent research can answer some of these important questions.
- Learn how research can be used to support your advocacy work.
Registration & Tea/Coffee from 14.00
Agenda:
14.30 Welcome & Opening - Vicky McGrath, CEO RDI
14.35 Generation and use of Evidence in Advocacy - Dr Avril Kennan, CEO Health Research Charities Ireland
15.00 Rare is not Rare: Prevalence of Rare Diseases - Debby Lambert, MSc, CCGC; Information Scientist, National Rare Diseases Office
15.25 Incidence and Impact of Rare Diseases in the Irish Paediatric Population - Dr Emer Gunne, Research Associate, Temple St Children's University Hospital
15.50 Developing an evidence based advocacy campaign in Ireland: Burden of Inherited Retinal Dystrophies - Dr Laura Brady, Research Manager, Fighting Blindness
16.15 Panel discussion - Q&A
16.45 Close
