San Francisco, California
London, United Kingdom
This is your chance to hear about the Northern Ireland Rare Disease Implementation Plan; (http://www.nirdp.org.uk/consultation2014) and your chance to get your voice heard, whether you are a patient, a carer, a health or social care professional, or someone who works with people living with a rare disease in education or any other aspect of life.
If you are living with a rare disease, or caring for someone with a rare disease, it's your chance to say what matters most to you and your loved ones or your colleagues. Will the Implementation Plan help deliver better care and support? Is there an aspect of health and social care, or education, housing, employment, or transport, which could be improved? It's your chance to say how you think things could be improved; to point out if there is waste or inefficiency, and how resources could be better used.
Come along: hear what the Implementation Plan aims to achieve; and have your say!!
When & Where
Northern Ireland Rare Disease Partnership [NIRDP]
We are a not for profit organisation, bringing together those living with a rare disease and organisations representing them: clinicians and other health professionals; researchers and producers of specialist medicines and equipment; health policy makers and academics. Our aim is to work constructively with stakeholders and service delivery organisations to find practical ways of improving the quality of life, treatment and care for those with rare diseases in Northern Ireland.