Joint NI Rare Disease Day 2015 and Inaugural World Birth Defects Day Conference

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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”.

Book NOW! Please register through Eventbrite.

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Get Your Voice Heard: Tweet Chat and Last two Open Meetings: Antrim and Belfast

In addition to the Tweet chat, on Friday 9 January from 7 to 8 pm, the last two of the Open Meetings will be held on Monday 12 January and Tuesday 13 January.

Monday 12  January in the Antrim Civic Centre, Stiles Way, Antrim from 1.30 to 3.30; and

Tuesday 13 January in the Clinical Sciences Block A, Royal Victoria Hospital, Grosvenor Road, Belfast from 2pm to 5 pm. PLEASE NOTE THIS NEW TIMING!!

It is really important that you have your voice heard, and contribute to the discussion, especially at a time when difficult decisions will have to be made round resources.

Things can be improved, changes can be made to happen, but we have to speak up, highlight improvements,  good practice, and identify the problems and how to solve them.  Come along and share your knowledge and experience- we are Stronger Together!

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Implementation Plan Tweet Chat: 9 January 2015

Another chance to have your say… We are hosting a Tweet Chat on 9 January from 7pm to 8pm: keep the time slot free and watch out for more details…

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Open Meeting Registrations

To register for the upcoming open meetings, go to:

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Implementation Plan Consultation: Open Meetings

The Open Meetings on the Draft Rare Disease Implementation Plan are ongoing:

6 January 2015: Lecture Theatre, Level 2, South West Acute Hospital, 124 Irvinestown Road, Enniskillen Co Fermanagh, BT74 6DN, 3.30pm to 5.30 pm

7 January 2015: Mourne Country Hotel, 52 Belfast Road, Newry, Co Down BT34 1TR, 7pm to 9 pm

8 January 2015: Conference Room, Portadown Health and Social Services Centre, Tavanagh Avenue, Portadown, BT62 3BU, 2pm to 4pm

12 January 2015: Whinstone Suite, Antrim Civic Centre, 50 Stiles Way, Antrim, BT41 2UB, 1pm to 4 pm

13 January 2015: Lecture Theatre, Block A, Royal Victoria Hospital, Grosvenor Road, Belfast, BT12 6BA, 2pm to 5pm PLEASE NOTE: NEW TIME!!

This is your chance:

  • to listen to what is in the Plan; ( )
  •  to have your say, about what matters to you- whether it’s in relation to a health or social care aspect of living or working with a rare disease, or how having a rare condition impacts on education, transport, work, or housing.

Whether you are a patient, a carer, a member of Health and Social Care staff, or anyone whose work involves tackling the challenges of rare disease, this is your opportunity to shape the future; and to make a difference.

Please register through eventbrite,  so we know numbers/needs for catering; and so that we can make sure there is enough reserved parking for disabled access etc.   But if you don’t register, you will still be very welcome!

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