A “Must Go To” Conference, 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.
Why a Joint Event?
Many rare diseases are present and marked at birth, including many heart defects, others are not; many Birth Defects are rare, some are not. But there is much in common in managing life limiting and long term conditions. Joining together in this way will raise awareness of both birth defects and rare disease, and will demonstrate the benefits of working together, and of collaboration in tackling these complex problems.
What’s the Objective?
This is part of our programme of bringing high quality learning events to people, across the whole of Northern irealnd; 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 medicine.
The morning session will focus on birth defects; the afternoon session on rare disease. The day as a whole will bring together families, carers, patient representative organisations, industry representatives, and clinicians and other health and social care professionals, with policy makers and advisers. It’s a unique opportunity to share expertise and experience and to look at the way forward for better care and better outcomes.
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 this important Conference.
Why the Lough Erne Resort?
The Lough Erne Resort is widely accessible, and it particularly enables those in the south and west of Northern Ireland to attend; to hear from experts, and to meet others in a similar situation. We also extend a cordial invitation to colleagues and families across the border. The theme for International Rare Disease Day is “Hand in Hand, Day by Day” and we’d love to make that real through this event. It’s also fitting that those who show great leadership in living and working with rare and complex conditions “Day by Day” should have a chance to meet, listen, have their say and learn, in the place which has hosted the “Leaders of the World”.