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:
Connecting
- 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
Advocating
- Strong cohesive and coherent voices
- Empower our member
- 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 mong medical and health and social care professionals, policy officials, rare disease families 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
Mayor Graham Warke pictured with young Lewis at the Northern Ireland Rare Disease Partnership reception at the Guildhall