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 dependants, carers, and those treating them.  We will achieve this by:

Connecting

  • Stronger Together
  • Outreach to the rare disease community in Northern Ireland
  • Tackling disadvantage and inequality

Advocating

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

Educating

  • 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, and the public

Innovating

  • 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