NI Rare Disease Partnership

Services

Advocating: Establish a networking/lobbying/policy Task-force, to

• develop the Rare Disease Plan,
• ensure rare disease issues are mainstreamed into policies and programmes, and
• raise individual issues with relevant authorities

Educating: Developing educational and training interventions to

• improve awareness of rare diseases and rare disease issues and impacts, and
• increase levels of knowledge and expertise

among medical and health and social care professionals

Innovating: Work together to:

• 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

Working with and for people affected by a rare disease, their dependants, carers, and those treating them