Advocating and Influencing

There are over 7,000 rare diseases: chronic, disabling conditions which affect 1 person in 2000 or fewer. It’s estimated that over 100,000 people in Northern Ireland are impacted by rare disease. The majority of these have no condition specific group to support them. NIRDP works to advocate and influence on their behalf, through representation on the Northern Ireland’s Rare Disease Implementation Plan Steering Group, chaired by Professor Ian Young, Northern Ireland’s Chief Scientific Officer; through participating in the UK Rare Disease Forum; through participating in the Neurological Conditions User Reference Group; and through all our activities, including through working with elected representatives to raise their awareness and understanding of rare disease and its impacts.