Our Vision

No one is disadvantaged because of the rarity of their condition

Our Aim is to catalyse transformational change by working with and for people affected by a rare disease, their dependents, carers, and those treating them.  We will achieve this by:


  • Stronger Together
  • Outreach to the rare disease community in Northern Ireland
  • Tackling disadvantage and inequality
  • Reaching out to those living and working with rare disease elsewhere in the UK and Ireland, and across the world


  • Strong cohesive and coherent voices
  • Empower our members
  • Embed rare disease issues in policy formation and service delivery


  • Raise awareness of rare diseases and rare disease issues and impacts
  • Increase levels of knowledge and expertise
  • Act as a knowledge broker

among medical and health and social care professionals, policy officials, rare disease families and the public


  • develop and implement improved methods of managing and treating rare diseases
  • improve the quality of life for those affected by rare diseases; and
  • increase the efficiency and effectiveness of care and support