SUPPORTING INDIVIDUALS WITH CHARGE SYNDROME

Sense Northern Ireland supports children with vision and/or hearing loss and those with multiple and complex needs.

As part of their Touching Lives Project, supported by Big Lottery, we are holding a training and information day with Gail Deuce for professionals on Friday 12th October in Girdwood Community Hub, Belfast and a family day on Saturday 13th October.  This project is primarily aimed at families with children aged 0-12.

CHARGE Syndrome is a rare genetic condition and a leading cause of hearing and vision loss and multi-sensory impairment.  The charity are aware of a number of families with very young children recently diagnosed with CHARGE Syndrome in Northern Ireland, and it is likely there are others not known to the charity.  Most children with CHARGE Syndrome have complex and ongoing medical and sensory needs, we hope you will be able to forward this to your colleagues and to families you may know of who might be interested.

There is no cost to professionals or families but places are limited. To find out more about the agenda for professionals, click on the link: Charge Flyer professionals[75134], or for the agenda for families, click here: Charge Flyer parents[75135]

If you would like any further information or are interested in attending please get in touch with Liz Gorman, Family Support Worker, on Liz.Gorman@sense.org.uk or call mb: O7799660006

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NIRDP Annual General Meeting: 25 Oct, Grosvenor Hall

Join us for our annual general meeting, 3-5 pm, 25 Oct, at Grosvenor Hall, BCM, Glengall St.

Our annual review will include formal updates on our report and accounts presented by directors and the appointment of directors to fill current vacancies.

Full details to follow.

All formal business will be followed by updates from NIRDP, QUB and Health Social Care NI on rare disease related activities

To register your attendance email us at info@nirdp.org.uk or book your ticket via eventbrite: https://www.eventbrite.co.uk/e/nirdp-annual-general-meeting-tickets-51068616607

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Huntington’s Disease Association All-Island Conference

      

 

Huntington’s Disease Association Northern Ireland & Huntington’s Disease Association of Ireland

Invite you to their Joint Inaugural Conference
Friday 28th September

Canal Court Hotel, Newry, BT35 8HF

 

DRAFT PROGRAMME
12- 1pm            Registration and light lunch/refreshments served
1-1.30pm         Welcome – Sorcha McPhillips, HDANI & HSC speaker – launch of E-learning resource
1.30-1.45pm    Patricia Towey, HDAI brief intro on HDAI and speaker intros
1.45-2.15pm    Lauren Byrne, University College London, HD Department
2.15-2.45pm    Professor Asa Petersén, Lund University, HD Center
2.45-3.15pm    Aoife Gallaher, Bloomfield Hospital, Dublin
3.30-3.45pm   Comfort break tea/coffee
3.45-5.30pm   Interactive workshop on HD management led by HDANI with input from carers and professionals
5.30pm             Closing remarks, photos, certificates

This is a not for profit event with a fee of £20/€22 which includes lunch and materials
Payment can be made on the day or invoiced as appropriate

If you have any questions about the conference or would like to register
email sorcha@hdani.org.uk or call/text 079 8284 3907
email info@huntingtons.ie or call 01 872 1303

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Building Research Partnerships: One day workshop

                                                

 

Involving the Public in the Design and Conduct of Research:

Building Research Partnerships

A workshop for Researchers & Members of the Public

11th October 2018, 9:30 am – 4pm, Ulster University Jordanstown

 

 

This free workshop will look at practical ways to involve patients and the public as partners (PPI) in the research process. It will explore the issues related to becoming and being a member of the public involved in research and the role of researchers in facilitating this involvement.

The workshop is aimed at patients, carers and members of the public who are interested in getting involved in research and researchers interested in involving patients, carers and the public in their research.

Why should I attend?

  • As a patient, carer or member of the public, you will gain an understanding of what it means to be involved in research at each stage of the research process.
  • As a researcher, you will gain an understanding of how patients, carers and the public can get involved in research, practical tips, the opportunity to share your research expertise and build research partnerships.

 

Registration:

To register your interest for this workshop please contact: cara.mcclure@hscni.net  or Tel: 028 9536 3399 by 1st October 2018.

 

Places will only be confirmed after the closing date.

 

 

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EURORDIS Winter School 2019 applications are now open!

 

The EURORDIS Winter School on Scientific Innovation and Translational Research consists of one week face-to-face training held in Paris in March.

The next on-site training will take place on 11-15 March 2019 at the Imagine Institute in Paris. Apply now to take part in a week of face-to-face training, applications close 15 September.

Applicants will be notified of the outcome of their application by mid October.

For more information or to register your interest log on to https://openacademy.eurordis.org/winterschool/

 

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