The Northern Ireland Rare Disease Partnership is marking International Rare Disease Day 2015 with a unique joint event, celebrating the first ever World Birth Defects Day on 3 March 2015, in the beautiful surroundings of the Lough Erne Resort, County Fermanagh. This is part of our programme of bringing high quality learning events to people, across the whole of Northern Ireland; and we are very grateful for the Lough Erne Resort's willingness to assist us with this - an excellent example of partnership!
International Rare Disease Day's Theme this year is Living with Rare Disease, Day by Day, Hand in Hand. The aim of World Birth Defects Day, established by 12 leading global health organisations, is to raise awareness about the occurrence of birth defects, develop and implement primary prevention programs, and expand referral and care services for all persons with birth defects.
This event will be a powerful expression of those themes. Presentations will include discussions on what birth and rare conditions are; on living life to the full with rare and complex conditions, for both children and adults; the importance of patient and carer engagement; and what the future holds in terms of research into genomics and the prospect of personalised medecine.
We look forward to welcoming a wide range of patients, carers, clinicians and health and social care professionals, as well as charities and other organisations, to the Lough Erne.
Please don't hesitate to get in touch if you have any queries.
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.
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