Northern Ireland Rare Disease Partnership (NIRDP)
We are a not for profit organisation (recognised by HMRC as a charity), bringing together those living with a rare disease and organisations representing them: clinicians and other health professionals; researchers and producers of specialist medicines and equipment; health policy makers and academics.
Our aim is to work constructively with stakeholders and service delivery organisations to find practical ways of improving the quality of life, treatment and care for those with rare diseases in Northern Ireland.
To achieve this, we work closely with the DHSSPSNI, Health and Social Care Board, Public Health Agency and the Patient Client Council in Northern Ireland, with RDUK, and with IPPOSI, MRCG and GRDO in the Republic of Ireland.
We want to increase our network of interested organisations and people. If you are affected by, or care for someone with, a rare disease in Northern Ireland, or you are concerned with rare disease issues as a clinician, health or social care professional, researcher, or industry member, and want to know more, please contact us!
Our Board of Directors
- Farhana Ali
- Rosemary Arbuthnot
- Christine Collins
- Mark Cunningham
- Alex Duncan
- David Finegan
- Sarah McCandless
- Helen McClean
- Cathy McKillop
- Dr. Amy Jayne McKnight
- Fiona McLaughlin
- Frances Murphy
- Lesley Rooney
- Dr. Fiona Stewart, MBE
