Category: Meetups

Living Well with…Programme ( Via Zoom)

Posted on by Caroline McFerran

Please see all free events below: 

The concept of the ‘Living Well with…’ programme is to offer a series of online events, geared specifically at people living with, caring for, working with or friends of someone with a rare condition. All sessions will be led by the NI Rare Disease Virtual Hub Support Team – Edel & Caroline – and will feature a host of guest speakers covering topics such as exercise, advocacy and mental health.

Details below of free events: 

3rd March @330pm – T’ai Chi delivered by Disability Sport NI.  Come along and try an Introductory session – suitable for all abilities.
12th March @11am –Rare Disease Parents & Carers Information Session, 
with Guest speakers from:
‘Contact’ & ‘The Family Fund ‘ Gain information on services available from Contact – a charity which supports disabled children and how to access funding from the Family Fund and meet up with other carers and parents.
26th March @11am – Rare Disease Social Cafe: this is a really informal session to give our rare disease community the chance to get together for a chat over Zoom.
31st March @3.30pm Love to Move – delivered by Disability Sport NI. Come along and try this Love to Move musical movement session, suitable for all abilities.

NOTE: If you would like more information or to sign up, please email info@nirdp.org.uk or call 07704476929

BREXIT and access to medicines

Posted on by Christine

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!

Posted on by admin

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 by contacting info@nirdp.org.uk show that we are #StrongerTogether, and help make a difference in 2019!

All money raised will go directly towards NIRDP 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 

Foyle and North West Forum meeting update

Posted on by admin

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.