News

Join us in raising Rare Disease  Awareness: Host a Rari-Tea event!

Raising awareness of Rare Diseases is crucial to every aspect of our work to improve services and the quality of life.  So in Spring 2019 we are launching our first Northern Ireland wide awareness-raising Campaign, aiming to make an impression in every town and townland.

Our approach is based on the popular “coffee morning” model, but our focus is on our favourite tipple, Tea!

We are partnering with local tea company, Infuse Artisan Tea, a Coleraine based business, who will be helping to lead the way.

The Rari-Tea events will coincide with the worldwide events marking International Rare Disease Day on 28 February, so will focus on the period from mid-February to mid-March (21st February – 7th March)

To get involved, just get together – a few individuals, an organisation, a business, a sports team – and hold a RariTea event. It can be a posh Afternoon Tea; or a mug of Builder’s Brew…just have some tea, and take a picture (or two) for Twitter, Instagram etc tagging @NI_RDP (twitter) or @NIRDPNews on Facebook, and use the hashtag  #RariTea

Register your interest via this link; show that we are #StrongerTogether, and help make a difference in 2019!

All money raised will go directly towards raising funds for a full-time Northern Ireland Coordinator who can help families and patients affected by rare conditions access the help and support that they often fail to receive.

Show your support this February and help make a difference to the lives of those affected by rare and hard to diagnose conditions.

To find out more contact us via email at info@nirdp.org.uk 

Tuberous Sclerosis Patient Conference: Understanding TSC-Associated Neuropsychiatric Disorders (TAND)

For anyone interested in the upcoming conference by Tuberous Sclerosis Association, please find details of the event below.

This event is free of charge and anyone interested in attending can download the booking form, Tuberous Sclerosis Patient Conference booking form[92980], and email directly to Claire Kirk at Claire.kirk@tuberous-sclerosis.org

Date: Fri 25th Jan 2019

Venue: Post-graduate Centre, Belfast City Hospital

 

Agenda:

09.15               Registration & coffee 

10.00               Chair: Prof Patrick Morrison

10.00               Overview of TSC: Rachel Hardy (Belfast Trust)

10.15              Patient perspective

10.30               Introduction to TSC- Associated Neuropsychiatric Disorders (TAND): Prof Petrus de Vries (University of Cape Town, South Africa)

11.30               Coffee

11.55               Local Support for Autism: Shirelle Stewart (The National Autistic Society)

12.15               Emotional Regulation tools for young people with autism: Rachel Ferguson (Middletown centre for autism)           

12.45               Patient perspective

13.00               Lunch

14.00              Chair: Dr Deirdre Donnelly

14.00               Patient perspective

14.15               Managing TAND: current treatments & future research: 

Prof Petrus de Vries (South Africa)

15.15               Coffee

15.45               Getting the right support in School for children with Special Educational Needs: Fiona O’Donnell – SENAC (The Special Educational Needs Advice Centre)

16.15               Louise Fish – TSA (Tuberous Sclerosis Association) – conclusion of meeting

16.30               Panel Discussion

17.00               Close of meeting

‘What Works’ Report from The Community Development and Health Network

 

To all those who attended the “What Works” event that ran by The Community Development and Health Network (CDHN) this summer, a copy of the report is now available to download via the link:

What works summary sept18[84424], or via the CDHN website, www.cdhn.org.

Please feel free to share through your own networks.

The CDHN would like to pass on their thanks to all who took part in these events; hopefully you found them useful, to those who were unable to attend, the report provides a useful summary of the day.

If you would like to discuss the report, or any of their other work, please contact Joanne Morgan on 028302 64606 or email: info@cdhn.org.

Healthcare in the UK: Information website & newsletter sign up

Please find below a link to a very useful website as has been recommended to us by one of our members.

The site offers all the latest news from the healthcare sector, about health care across the UK.

There is an opportunity to sign up for a daily or weekly newsletter to keep you up to speed on all new happenings within this sector.
https://www.healthcareintheuk.co.uk/

You can also follow via FB at @healthcareintheuk or twitter @myhealthcare_uk

Personalised Medicine Awareness Month 2018

Join the European Cancer Patient Coalition (ECPC) in making personalised care more of a reality across Europe!

This November, join @cancereu advocating for greater access to molecular testing in Europe. Just one test could change a patient’s treatment plan & help us in #CrackingTheCancerCode.

The ECPC has kicked-off their first ever Personalised Medicine Awareness Month 2018!

The European Cancer Patient Coalition calls on everyone to unite this November and promote the importance of awareness and access to cancer molecular testing in all European countries!

Join the ECPC today and show your support by downloading the Campaign Action Toolkit. It contains key messages, social media materials, a press release, outreach letter to policymakers and much more – to help patient organisations raise awareness and gather commitment at a national level.

To find out more about the campaign click here.

#CrackingTheCancerCode #PMAM18

The Healthcare Improvement Studies Institute (THIS Institute) Workshop

 

Dr Anne Kilgallen, Chief Executive, Western Health and Social Care Trust would like to invite you to attend a creative and interactive workshop exploring health services research.  The workshop will be facilitated by THIS Institute (The Healthcare Improvement Studies Institute).

THIS Institute, at the University of Cambridge, is working with a Wellcome Trust award for public engagement to produce a series of creative and interactive workshops exploring health services research.

The workshops are for NHS staff, patients, carers, researchers and anyone else who interacts with the healthcare system.

They aim to show how research evidence is essential for improving the design and delivery of healthcare as well as how research can have a real impact on patients and staff working within the system. The workshops are based around a short theatre piece showing a patient’s journey through care, and then use participatory forum theatre techniques to start conversations around the impact and importance of research.

When: Friday 30 November 2018

Where: Lecture Theatre1, Trust Headquarters, MDEC Building, Altnagelvin Hospital

Time: 2.00pm – 4.00 pm

 

If you wish to attend please RSVP by Tuesday 20 November 2018 to:

Health Improvement, Equality & Involvement Department,

Western Health & Social Care Trust,

Maple Villa, Gransha Park, Londonderry, BT47 6WJ

Telephone: 028 71865127; E-mail: health.improvement@westerntrust.hscni.net

 

If you have any specific support needs please notify the office as soon as possible.

NIRDP “Our Governance Role” Workshop: 7 November 2018, 4pm to 7pm, Grosvenor Hall, 5 Donegall St, Belfast,

As part of our NIRDP “training” work, we are holding  a Workshop for those who are Trustees/Governors/Directors of Charities and voluntary organisations; or who are thinking of taking up the role.

The Workshop will cover:

  • “Our Governance Role”, led by Eileen Mullan of Strictly Boardroom ; and
  • An overview of GDPR, delivered by NICVA

This is a great opportunity to learn more about how Boards work; and what is needed from Board Members to make their organisations work effectively, as well as to learn about how to manage information , under the new GDPR rules.  It will be fun and very informative; and it’s FREE!

Places are limited, so if you would like to come, please email: christine@nirdp.org.uk by Wednesday 31 October

 

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

Register now for Our AGM and Autumn Meeting: 25 Oct, Grosvenor Hall

Register NOW for our annual general meeting and Autumn Meeting, 3-5 pm, 25 Oct, at Grosvenor Hall, BCM, Glengall St.

Our annual general meeting includes formal updates on our report and accounts presented by directors and the appointment of directors to fill current vacancies.

Then this formal business will be followed by updates from

  •  our NIRDP Project Officers, Tanya and Ian;
  • QUB?Centre for Public Health;
  • the Neurological Care Coordinators, and
  • the Ten Thousand More Voices programme.

There will also be tea/coffee and biscuits (and cake!)

Come along to hear about what is happening, and to make your voice heard on future priorities for NIRDP.

Register now- by email to us at info@nirdp.org.uk or  via eventbrite: https://www.eventbrite.co.uk/e/nirdp-annual-general-meeting-tickets-51068616607

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