Register now for the 2020 Joint North South Rare Disease Day Event!
NIRDP are working with Rare Disease Ireland and others to plan an inspirational and informative day, in QUB’s Riddell Hall on 28 February 2020. Spread the word, and follow the link below to register..
Thanks to the generous support from Ards and North Down Borough Council, we are holding our second North Down and Ards Rare Disease Forum event on 16 January 2020, in the Carnegie Library, Hamilton Road, Bangor BT20 4LH, from 12.15pm to 2.30 pm.
This event is focussed on those who are caring for someone with a rare condition, in partnership with the QUB Rare Disease Team, who are gathering evidence about how support for rare disease carers could be improved.
Outline Agenda
12.15 Refreshments: (tea, coffee, water, scones, cake)
12.35 Welcome: Dr AJ McKnight, Queen’s University, Belfast
12.45 Carers Research Project: Julie McMullan and Kirsten Downes, Queen’s University Belfast
13.00 Facilitated Conversation: Exploring challenges, what is good support, and priorities to improve support for cares across Northern Ireland (Facilitator: Grace Henry)
14.20 Close: Rhoda Walker, Chair, NIRDP
Participant Packs with carer resources will be provided to attendees
Information Stands will include NIRDP, HSC Care Co ordinator, Carers NI; Contact a Family, Family Fund
Please do come along: there will be good company and cake, information and support; and a chance to influence and shape change.
The Syringomyelia Arnold Chiari Association is holding its 29th AGM and Conference on Saturday 19 October in the Rotunda Suite, Europa Hotel, Great Victoria Street, Belfast BT2 7AP from 4pm to 6.30 pm
Dr Pamela Bell, Chair of the Pain Alliance NI, is the Keynote Speaker, on the topic of “Coping with Pain” which is such an important issue for all those living with Syringomyelia and related conditions: see the link below for full details
Please don’t hesitate to contact the SACA Helpline on 07826 004 008 or e mail info@saca.org.uk for more information and to register!
Registered with The Charity Commission for NI NIC100528
HM Revenue and Customs No. XT6688
Phone: 078 26 004 008 (Helpline) E-mail:info@saca.org.uk
Saturday 19th October 2019 at 4.00 pm – 6.30 pm
Rotunda Suite, Hastings Europa Hotel, Great Victoria St, Belfast BT2 7AP
Programme:
4.00 pm Welcome
4.05 pm Dr Pamela Bell, Chair, Pain Alliance NI on ‘Coping with Pain’
4.45pm Refreshments (Please let us know if you have any special dietary requirements)
Time to mingle, chat and renew your Membership Fees
5.30pm Annual General Meeting
If you are planning to attend please contact our Helpline on 078 26 004 008
or email us on: info@saca.org.uk
This is a free event and all are welcome. Please bring along a prize for the raffle.
Paid up members can avail of the SACA Travel Fund which will also assist members with city centre car parking charges for this event.
The Patient and Client Council (PCC) is establishing a training and support programme to enable the citizens of Northern Ireland to take part in the various Work Streams involved in implementation of the “Delivering Together Health and WellBeing 2026” Strategy.
These Work Streams will include such high profile initiatives as re-shaping the way Stroke Services are delivered, as well as more routine matters, such as establishing dedicated centres (“Elective Care Centres”) for routine surgical procedures, which will help cut waiting lists for these operations.
There is acute time pressure, because the need to reform the Health system is so pressing; so the PCC are taking the first steps to recruit people who would be interested in participating in the Work Streams, and to provide the first step of the induction and training process.
Please see the PCC’s Making Change Together infographic
for more details If you are interested in taking part, register your interest with Jessica Murray (e mail: Jessica.murray@hscni.net); and spread the word in your networks. This initiative will be a great opportunity to get our voice heard, where and when it matters, in building our Health and Social Care system.
We in NIRDP are working in partnership with the PCC to design and develop the training and support programme, bringing our NIRDP Members’ knowledge and experience to the table. Julie Power, our Director and Secretary and a EUPATI Fellow, and Kerry Moore, our RANK Foundation funded “Time to Shine” Intern, are working with Jessica Murray in the PCC to assemble and develop the training package. This will start with a basic introduction to the HSC system, but will lead on to modules covering wider issues, including how to engage and advocate most effectively as an “Expert” Patient/Service User/Carer.
The Centre for Public Health at QUB (@CPH_QUB) are researching the experience of using complementary and alternative medicines for rare diseases in Northern Ireland. As part of this work, NIRDP and the Centre for Public Health are hosting a discussion workshop for people with experience of using complementary and alternative medicines, or who are considering this approach, to share experiences and gather information.
The Workshop is in Lecture Room 1 at Riddel Hall, from 10.30 to 12.30 on Monday 25 March 2019: there will be tea/coffee/water/juice and traybakes; places are limited to 25, so please register and share your experience!
Before Christmas, NIRDP wrote to the Secretary of State for Northern Ireland asking for reassurance that access to medicines, especially those specialist drugs needed for rare diseases, would be maintained in the event of a No Deal Brexit.
Her reply is below:
Response – SoS – Ms Walker – MC-19-83
Also, the following Written Statement has been issued by the UK Minister of State for Health, Stephen Hammond: https://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2019-02-25/HCWS1358/
Essentially, these confirm that Northern Ireland has been included in the UK wide contingency plans; and access to medicines and medical supplies (including for clinical trials) should be secure, safeguarded by the provision of:
If anyone has a particular worry, contact us on info@nirdp.org.uk, and we will follow up.
The Centre for Public Health at QUB (@CPH_QUB) are researching the experience of using complementary and alternative medicines for rare diseases in Northern Ireland; and ran a Survey to gather information (see the post below)
NIRDP and the Centre for Public Health are now hosting a Discussion Workshop for people with experience of using complementary and alternative medicines, or who are considering this approach, to share experiences and gather more information.
The Workshop is in Lecture Room 1 at Riddel Hall, from 10.30 to 12.30 on 6 March 2019: there will be tea/coffee/water/juice and tray-bakes! Places are limited to 25, so please register now, and share your experience and questions!
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:
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
We are busy finalising the Programme for this, the Fourth Joint North South Rare Disease Conference. There are still some details to sort out, but see below for the latest version.
Programme
09.00 – 10.15 REGISTRATION AND COFFEE
10.15 – 10.30 Welcome and Introductions
Fiona McLaughlin, Chair NIRDP & Philip Watt, Chair MRCG
10.30 – 10.45 “Nothing about us without us”
Les Allamby, Chief Commissioner, NIHRC
10.45 – 11.30 Rare Disease and the Strategies
Dr Michael McBride, Chief Medical Officer, DoH (NI)
Another Speaker TBC
11.30 – 12.30 Participating in Research
Dr Maurice O’Kane, NI Clinical Research Network
Dr Claire Lundy, Regional Paediatric Neurodisability Service
Another Speaker TBC
12.30 – 13.30 LUNCH
Poster Competition: “Nothing About Us Without Us” (see below)
Side Event – Northern Ireland Human Rights Commission
13.30 – 14.15 Panel Discussion – BUILDING CAPACITY
Chair – Mary Hinds, PHA
Panellists to include: Derrick Mitchell, IPPOSI; Gemma McKillen, EUPATI; Julie Power, VIA,
14.15 – 15.15 WHAT DOES SUCCESS LOOK LIKE?
100k Genomes Programme – Dr AJ McKnight
The 22 Q Journey: Anne Lawlor, Chairperson 22q11 Ireland Support Group; Dr Tabib Dabir, BHSCT; Gillian Cassidy, 22Q Support Group Dr Mary Dallas, PHA
22 Q Video
15.15 – 15.30 COFFEE BREAK
15.30 – 16.15 Panel Discussion – BEYOND THE STRATEGIES: NEXT STEPS
Chair – Professor Ian Young
Dr Avril Kennan, MRCG
Philip Watt, MRCG
Anne Lawlor, Chairperson 22q11 Ireland Support Group
2 Members TBC
16.15 – 16.30 PRESENTATION OF POSTER COMPETION PRIZES & NIRDP AWARDS
Fiona McLaughlin, Philip Watt & Professor Ian Young
16.30 CLOSE – Philip Watt
Register NOW to be sure of your place!
Note: There is a Poster Competition: the Topic, is “Nothing about us without us” tying in with the Rare Disease Day Theme of “Research: Patients are not only subjects but also proactive actors in research”https://www.rarediseaseday.org/page/news/the-theme-for-rare-disease-day-2018-is
The Competition (with prizes!) aims to showcase examples of research, academic, clinical, social where patients and families were engaged and involved; what difference it made; and what is happening now and into the future. So if you or your organisation have worked with rare disease patients, families and carers to do any research, surveys, etc which are being used or could be used to influence and shape treatments, care and services for people with rare disease, send a short abstract to rarediseaseday2018@health-ni.gov.uk , with POSTER COMPETITION in the Subject line, by Friday 23 February. Posters must be A0 size Portrait, and brought to Riddell Hall on the day by 9.00am on 5 March 2018 for display.
Rare Disease Day is coming ! This year, we are looking forward to welcoming you to the fourth Joint North South Rare Disease Day event, held with our friends the Irish Rare Disease Taskforce, on 5 March 2018 in the splendid surroundings of QUB’s Riddel Hall, Stranmillis Road, Belfast.
The Theme for this year’s Rare Disease Day is Research; and the Joint North South Conference will focus on:
We are still working on the Programme, so watch out for updates!
Register now (FREE) here