About Us

We are “Not for Profit” Company and a NI Registered Charity.  We bring together those living with a rare disease and organisations representing them, which you can find here; clinicians and other health professionals; researchers and producers of specialist medicines and equipment; health policymakers and academics.

Our Vision is that no one is disadvantaged because of the rarity of their condition.

We aim 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 do this, we work closely with the Northern Ireland Department of Health; the Health and Social Care Board, Public Health Agency and the Patient Client Council;  and with Patient Representative Organisations in the UK (Genetic Alliance UK; Unique)  Republic of Ireland (IPPOSI, MRCG and GRDO) and Europe (EURORDIS), as well as with a wide range of  condition-specific groups and organisations.

We want to increase our network of interested organisations and people.  If you are affected by, or care for someone with, a rare condition in Northern Ireland, or you are concerned with rare condition issues as a clinician, health or social care professional, researcher, or industry member, and want to know more, please contact us!

To find out more about our Board of Directors click here: