Rare Disease Forum 2022
The Rare Disease Forum (RDF) is a public and patient involvement (PPI) initiative for Ireland, North and South. The rationale for the Forum is that much more needs to be done to address the health and social care needs of those living with a rare disease in Ireland.
The founding organisations and members of the Rare Disease Forum Steering Group are Rare Diseases Ireland; the Northern Ireland Rare Disease Partnership; Health Research Charities Ireland; the Irish Platform for Patient Organisations, Science and Industry; and Cystic Fibrosis Ireland. It is an evolvement of the Irish Rare Disease Taskforce, aimed at broadening the conversation and hosting events that help progression in tackling the big issues.
This event is the second ever meeting of the Rare Disease Forum and the first to focus on the topic of research. On behalf of the Steering Group, this event is being led by Health Research Charities Ireland (HRCI).
NOTE: Times are approximate but you are welcome to come in and out as suits you.
18:30 Welcome from Rare Disease Forum Chair
Philip Watt; CEO, Cystic Fibrosis Ireland
18.40 Rare disease research: a quick scene setting
Dr Avril Kennan; CEO, Health Research Charities Ireland (HRCI)
18:50 Transforming research in rare diseases through partnership
Dr Suja Somanadhan; Assistant Professor in Children’s Nursing, UCD
Julie Power; Patient Contact & Policy Officer, Vasculitis Ireland
19:05 Plans for a new Rare Disease Clinical Trial Network
Prof Rachel Crowley; Consultant Endocrinologist, St. Vincent’s Hospital
Liam Galvin; CEO, European Idiopathic Pulmonary Fibrosis Federation
19.25 Co-developing the NI rare disease action plan & supporting North-South collaborations
Prof Amy Jayne McKnight; Professor of Molecular Epidemiology & Public Health, Queen’s University Belfast
19.35 Questions for the audience via online tool
Linda McGrath; Events & Communications Coordinator, HRCI
19:45 Outstanding questions and closing remarks
Vicky McGrath; CEO, Rare Diseases Ireland
20:00 Meeting close