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 member
  • 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 mong 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
    Mayor Graham Warke pictured with young Lewis at the Northern Ireland Rare Disease Partnership reception at the Guildhall