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