Ards and North Down Rare Disease Forum: Forthcoming Events!

 

Thanks to generous support from Ards and North Down Council, we have been able to arrange two events over coming months for all those living or working with a rare disease in the Ards and North Down Borough!

First, on 9 December 2019 in the Ards Blair Mayne Wellbeing and Leisure Complex , from 10.00 am to 2 pm, we are holding the inaugural meeting of the Ards and North Down Rare Disease Forum: see here to register .  This is a great chance to get together, and to find out more about what is available locally.

Then, on 16 January 2020, in Bangor Library, we are holding an event 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.

 

Please Save these Dates- and Register to 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.

 

Rare Disease Day!

Rare Disease Day takes place on the last day of February each year (29th February itself being a rare day). Rare Disease Day is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We know that it’s not that rare to have a rare disease, but that’s not how it feels when you and your family experience that odd illness that nobody knows much, if anything, about. We know how important it is to come together and share experiences, to learn from each other and to amplify each other’s voices. We know the importance of working together to make change happen.

Today, NIRDP are holding events, hosted by the Mayor of Ards and North Down Council, and the Mayor of Derry City and Strabane Council. Many thanks to them for their help and hospitality. On Monday we host the 4th Joint North South Conference on Rare Disease at Riddel Hall, Belfast. We are all busy, and delighted to be so.

We hope you can join us- at an event, on Facebook or Twitter. Take some time to acknowledge how awesome you are, and the progress we’re making together. And, if you can, grab a slice of cake to celebrate!!

 

 

Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March

 

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:

  • Rare Disease and the UK and R.o.I Strategies
  • Expert Patients: Engaging with Research: EUPATI UK and RoI
  • Patients and Researchers: examples of good practice
  • Beyond the 2016 to 2020 Strategies: Next Steps

We are still working on the Programme, so watch out for updates!

Register now (FREE)  here