Who are we? We are a not for profit organisation, 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. NIRDP is a Company Limited by Guarantee, Registered in Northern Ireland: Number NI 611153
What do we do? Advocate, educate and innovate on behalf of those living or working with rare disease in Northern Ireland.
Why? Approximately 100,000 people are living with a rare disease in NI. Collectively, rare diseases are not rare. Unfortunately, that’s not how it feels when a loved one is mysteriously ill and no one seems to know what it is; or when they are eventually diagnosed with a disease that nobody’s ever heard of. 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.
Where? People live with rare diseases right across NI- in every GP practice and political constituency, in towns and townlands.
When? Members of the partnership are living or working with rare disease every day. The formal launch of NIRDP takes place on 29th February, International Rare Disease Day.
Do you know anyone with a rare disease? Do you want to make sure their needs are considered; that their voice is heard; that they get support; that the family is not isolated?
telephone: Sarah McCandless at the Patient and Client Council 0800 917 0222