Structure
Beaumont Hospital will act as National rare Kidney Disease Coordinating centre working in conjunction with a network of Renal unit across the country including .
- Dr Atiff Awann, Temple St Children’s Hospital Crumlin Childrens Hospital Soon to become National Childrens Hospital at St James’
- Dr Peter Lavin , Tallaght Hospital
- Prof Mark Little , Trinity Health representing Vasculitis Network
- Prof Yvonne O’Meara , Mater Hospital and University College Dublin
- Dr John Holian, St Vincent’s University Hospital Dublin
- Dr Liz Abbernathy , Waterford Regional Hospital Waterford
- Prof Liam Plant , Cork University Hospital Cork
- Dr Liam Casserly, Limerick University Hospital, Limerick
- Prof Donal Reddin, Galway University Hospital Galway
Mission
- Provision of care to patients with Rare Kidney Disease based on best available medical evidence through collaboration within Ireland and Europe
- Making available clinical trials for rare kidney disease to Irish patients where available
- Collaboration with other centres in Europe treating rare kidney disease
- Education of Irish nephrologists on rare Kidney Disease.
- Ensuring a seamless transition of children from children’s hospital with rare kidney disease to adult centres with sharing of knowledge of rare paediatric kidney disease with adult centres
- The provision of precise molecular diagnosis of patients with rare kidney disease
- The provision of therapeutic plan based on understanding of molecular diagnosis where available
- Development of rare disease specific registries within national renal It platform ( Emed)
Each member of the network will develop a presence on ORPHANNET describing the disease and therapeutic areas where they are experts in. Where expertise in Ireland is lacking we will engage through facilities at Beaumont to obtain expertise from specialists centres in Europe.
