Media

March 2021

Annual Report  1 April 2019 – 31 March 2020 

The Northern Ireland Rare Disease Partnership Annual Report  1 April 2019 – 31 March 2020

is now available.

To request a digital copy email info@nirdp.org.uk

 

February 2021

Living Well with….Programme

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: Sessions are now all open for booking or if you would like more information please call by emailing info@nirdp.org.uk or call 07704476929

Rare Disease Day 2021

Northern Ireland Rare Disease Partnership Official Video for #RareDiseaseday 2021!

Please Share!

We have a full programme of excellent FREE events for our #RareDiseaseDayNI Community –
Information sessions, our New Living Well with a Rare Disease Programme & a Virtual Musical Event.
Find out more  email info@nirdp.org.uk

Colour Flare for Rare

Its not too late to show us your ‘Colour Flair for Rare!’
A simple Colouring Challenge to raise awareness, everything you need is in the link below:

https://mcusercontent.com/7cfd1092fbdfaacce4e2e0091/files/2ac07b6e-337d-46ac-bad6-ae5be498882b/Colour_Flair_for_Rare_Information_for_MC.pdf

4th February 2021

Rare Disease Day Update 2021

The Northern Ireland Rare Disease Partnership Rare Disease update 2021: Please click the link below for a full details of all our upcoming Events:

https://mailchi.mp/4578af5b4668/rare-disease-day-update

 

 

24 December 2020

CHRISTMAS UPDATE

The Northern Ireland Rare Disease Partnership Christmas 2020 Update is available at the link below:

https://t.co/gjrRj91vn4?amp=1

Be sure not to miss out on future updates by signing up to receive news direct for by clicking the Join Us button on the website or  here: – nirdp.org.uk/join-us/

9 November 2020

NEWS RELEASE

Living with a Rare Disease in Northern Ireland?

New Stronger Together Team for Northern Ireland Rare Disease Partnership will offer vital lifeline!

Pictured: Twin Sisters Zoe Buxton and Lucy Smyth who live with Fibrodysplasia Ossificans Progressiva Syndrome (FOP)

The Northern Ireland Rare Disease Partnership (NIRDP) is a charity working to advocate, connect, educate and innovate on behalf of the ‘1 in 17’ living with or working with a rare disease in Northern Ireland and today the charity is pleased to announce a new ‘Stronger Together’ team to develop their ‘on the ground’ support across the region.

It’s easy to work out that with one in seventeen affected by a rare condition when you add us all together, we aren’t so very rare.  So, if you don’t have a rare condition in your family you will likely know someone, a neighbour, a friend or a colleague who does. On the rare spectrum conditions range from common rare, such as Hypermobile Ehlers Danlos Syndrome, which affects 1 in 2,000 to ultra-rare at the other end, Fibrodysplasia Ossificans Progressiva Syndrome (FOP) , which affects 1 in 2 million, with more than 7,000 other rare conditions in between.

These are strange times we are living in!  Covid19 has had a huge impact on everyone’s life here but none more so than the 110,000 people who live within the rare disease community.  Covid19 is new to us all and we are all aware how vital it is to observe the Hands, Face, Space regime.  In addition, for those with a rare condition, shielding has to be taken very seriously because of the added implications and seven months in, there is not yet light at the end of the tunnel. This makes the Stronger Together Project more vital than ever.

Lucy Smyth and Zoe Buxton from Ballymena who manage life with FOPs, tell us, “Our condition is rare, affecting one in two million but as twins the statistics move to one in three billion.  We know first-hand how incredibly isolating and frustrating it is to be diagnosed with a rare condition that no one seems to have heard of or have any information on. It would have been so helpful to have had a local support team available when we were first diagnosed, and we are sure that the Stronger Together team will help people to feel less alone as they move through their rare disease journey.”  Follow Zoe on Instagram @a_littlebitoflife and Lucy on @allthingsbeautifullymade.

Rhoda Walker, NIRDP Chair commented “We are so grateful to the Rank Foundation.  They understood our vision to ensure that “no-one is disadvantaged due to the rarity of the condition” and have put in place funding over several years to support this goal.  This has allowed us to welcome Edel Rogan, as our new Community Activator and Caroline McFerran, as our new Community Navigator.  Edel and Caroline join us to offer a virtual support hub, working through the maze that is rare conditions to develop and share information on support mechanisms, accessed locally, nationally and further afield.”

If you are affected by, or care for someone with, a rare condition in Northern Ireland why not register with us now. Or perhaps you are a clinician, health or social care professional or researcher concerned with rare condition issues and want to know more.  Registering will keep you connected with the help and support being developed over the coming months by the Stronger Together team. Join us by visiting our website at  https://www.nirdp.org.uk/join-us/, by emailing info@NIRDP.org.uk or by calling 0770 447 6929 or 0770 447 6930.