Rare Disease Day 2020: Joint North South Event, Belfast 28 February

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..

 

https://www.eventbrite.co.uk/e/joint-north-south-rare-disease-day-conference-tickets-90128668273?aff=ebdssbdestsearch&fbclid=IwAR0Ibl-6ZYqOjm9zQdwaFYS6Na8qjlqu2uf9c8L4cWRfpx_W73W-0zWMHiE

 

Ards and North Down Rare Disease Forum: Forthcoming Events!

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.

 

Syringomyelia Arnold Chiari Association AGM:Europa Hotel, Belfast 19 October 4pm to 6.30pm

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

AGM Notice 2019

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                            

 

 

29th Annual General Meeting Notice

 

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

 

  1. Annual Report Minutes of 2018 AGM     3. Treasurer’s Report
  2. Election of Officers   50% Fund  6. Any other business

 

 

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.

 

 

Complementary and Alternative Medicine (CAMs) Discussion Workshop- Rescheduled!

 

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!

BREXIT and access to medicines

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:

  • additional stockpiles in case of delays to ferry crossings;
  • air transport for time critical supplies;
  • prioritisation of medical supplies in the ferry spaces which government has purchased.

If anyone has a particular worry, contact us on info@nirdp.org.uk, and we will follow up.

Join us in raising Rare Disease  Awareness: Host a RariTea 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 RariTea 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 

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

Foyle and North West Forum meeting update

The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference to:

  • Support for carers available via the health and social care trusts
  • Importance of raising the profile of rare disease by telling our stories – thanks to Anita McDowell for allowing her story to be shared via the Derry Journal. Attendees were encouraged to utilise 10,000 more voices initiative to share their patient experience
  • Courses offered by recovery colleges and how to influence their prospectus
  • Challenges associated with travelling outside NI for medical appointments
  • Challenges for children and parents accessing appropriate educational support with rare conditions. Signposting to SENAC is advised but need to be aware the service is in high demand and early intervention is important .
  • Education Authorities are working under tight budgetary constraints and access to Statutory Assessment and the Statementing process and subsequent provision of support can be delayed.

We look forward to hearing more about the potential for an EDS and associated conditions conference that is being proposed by EDS UK with support from NIRDP.

The group will continue to meet quarterly, next meeting will be planned for September with details to follow.