We are a not for profit organisation (recognised by HMRC as a charity), working to support anyone living with or caring for someone with a rare condition. We connect, educate, advocate and innovate by 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. #RareNI #everydayisrarediseaseday #1in17 #ittakesavillage #rareaware