Autumn Partnership Meeting – Big News

More news on our Autumn Partnership Meeting, to be held from 10.45 to 12.30
(immediately after our AGM) in the Castleview Suite in the Pavilion at Stormont, on 27th October.

Jim Wells, MLA, Minister for Health, who will be the main speaker, will be making an important announcement about the long awaited Northern Ireland Rare Disease Implementation Plan.

Alastair Kent OBE, the Chair of the UK Rare Disease Forum, will update us on
progress in England, Scotland and Wales; and Philip Watt, Chair of the Irish rare Disease Taskforce, will describe what is happening in the south.

There will be an opportunity to meet the Minister, and key officials; ask
questions; and think about the key issues we need to tackle in making sure that the Vision of the UK Rare Disease Strategy – that no one is left behind just because their condition is rare – is realised in Northern Ireland.
All MLA’s and MP’s have been invited, so make sure you contact your MLA’s and MP to encourage them to come along, and show their support for this important step forward in getting rare diseases taken seriously in Northern Ireland!

Space is limited- so please register NOW below.

Also, please email if you or your organisation want to bring banners or literature, so we can make sure there is space!

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Foodie Delight Fundraiser

Mark Bevin, head chef at the Maldron Hotel is hosting a charity event with a difference this Friday night (17th October) at the Europa.

Mark has been gathering cookery books signed by the celeb chefs for a huge book sale and foodie event, with the proceeds going to NIRDP. Mark has received donations from Theo Randall, Michael Roux Junior, Ching He Huang, Mark Hix, Nigel Slater, Clodagh McKenna and Chapter One in Dublin. The list just goes on and on.

nirdp books

Are you a foodie?

A shopper?

A cookery book enthusiast?

An autograph hunter?

Do you fancy a night out on Friday?

Join us at the Europa, 8pm for a fabulous evening of fundraising! Bring your friends, neighbours and passing strangers…

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Palliative Care Week 6-11th October

Next week is Palliative Care Week.

Organised by The Palliative Hub, this event is the first-ever all island Palliative Care Week takes place from October 6-11.

It is being coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) and they want to encourage serious but positive conversations. They aim to raise a deeper public understanding of palliative care regarding when it can be used, who it is for and what its benefits are.

For further information see

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NIRDP AGM and Autumn Partnership Meeting

Save the date!

27th October, 1000 – 1230pm Stormont Pavilion, Belfast

We are planning for our NIRDP AGM and Autumn Partnership Meeting.

Come along to hear about the progress the NIRDP has made and to plan our next steps.

Come along to hear what’s happening on The Rare Disease Strategy and on other developments in health and social care!

Reserve a place below:

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Recovering from Disability Pride

A bright sunny Saturday in Belfast is worth celebrating in itself; a bright sunny day for Disability Pride was well nigh remarkable. Hundreds of people turned up, joining together to party.

Disability Pride parade and fun day in Belfast City Centre. Picture by Jonathan Porter/

Led by a brass band, we paraded through the city centre, singing, waving and cheering. There were minions, princesses and other animated characters. In the grounds of City Hall, there were food stalls, information tents, a concert and much grinning. A woman, unconnected with the event, approached me to tell me she’d been at many goings on at City Hall, but she’d never before seen anything where everybody was smiling.


People came for the parade, and stayed to party in the sun with the fabulous drama group, the wheelchair dancers, the comedian and the ska band.

Many, many congratulations and thanks to the organisers for their vision, commitment and hard work in making the day possible. It was fun, exciting and empowering. Roll on 2015!

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Rare disease and research – find out more

Rare Disease and Research

25th September, 2014


Postgraduate lecture theatre, Belfast City Hospital



Reception from 6pm, with food and drink

6.30 An introduction to the Rare Disease Plan  Christine Collins, NIRDP and HDANI

6.40 Huntington’s Disease  Majella McConville, HD Specialist Nurse

7.00 KEYNOTE  Why does research matter? Charles Sabine, international patient advocate

7.30 Research on a shoestring  Professor Patrick Morrison, Professor in Genetic Medicine, QUB

8.oo Rare disease research- the nuts and bolts!  Dr Amy Jayne McKnight, senior lecturer, QUB

8.15 Panel discussion, all speakers

8.30 End

To register attendance, please email, including any dietary requirements

This event is run by Huntington’s Disease Association NI, NIRDP and the Public Health Agency.

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Disability Pride Parade 2014

Get Set for Disability Pride Day!

We are now getting names, numbers and other details for the Grand Parade from Writers’ Square (St Anne’s Cathedral) to the City Hall; so register below:

And space in the Parade for those who want to walk, dance, zoom, or otherwise take part in the Parade to the City Hall… BUT we do need to know numbers and other details, so we can sort out the detailed arrangements..

Or you can just join the fun at the City Hall itself: we will have a NIRDP tent, to be a site for people to meet up and mingle – and set forth to enjoy all the fun of the fair!


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Northern Ireland Statement of Intent Published!

DHSSPSNI have today published the Northern Ireland Statement of Intent, setting out how work to implement the 51 commitments contained in the UK Rare Disease Strategy will be taken forward in Northern Ireland.

The Statement of Intent establishes a Northern Ireland Rare Disease Stakeholder Group which will steer the development of the Northern Ireland Rare Disease Implementation Plan, to be published for consultation this summer.

Read the Statement of Intent, see the 51 Commitments, and see who is involved in the Stakeholder Group here:

This is a welcome step forward in the long process of making a real difference for all those living with with rare disease in Northern Ireland.  We are looking forward to the draft Implementation Plan; and we will be making sure your views are gathered and represented in developing the final Plan.

Keep in touch through this website; and make your voice heard, by sending your views to:

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Taking part

Do you want to talk about your experience of A&E?

Maybe take part in Disability Pride on 20th Sept?

What about influencing the NI Implementation Plan for rare disease?

We can do all of them.

Northern Ireland Human Rights Commission are looking at people’s experience of A &E. How was dignity preserved? Was there appropriate information? Were you able to participate in  decisions made about your care?


NIHRC want to hear from patients, family members, carers and staff, and will accept anonymous submissions. It’s not about individual cases, or identifying staff- the purpose is to analyse how the NI Executive is meeting international human rights standards, in particular the right to health.

Submissions will be accepted via Freephone 0800 028 6066, on-line, or at a series of public meetings across NI (Belfast, Bangor, Downpatrick, Newry, Armagh, Ballymena, Coleraine, Derry~L’Derry, Omagh & Enniskillen) in September and October.


DisabiltyPride will be a major celebration of diversity taking place in Belfast on 20 September 2014. There’ll be a parade for walking/ rolling/ pushing/ travelling by float (floating?), a concert with music and comedy, food and retail tents and charity tents for activities, information & fundraising. NIRDP have booked 2 tents for use by the partnership – space for banners, teddy bears, leaflets etc. Contact if you want to share the space, at no cost.

‘Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride. It is a public expression of our belief that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience. Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group’s assumption that there is something inherently wrong with our disabilities and identity.’ Sarah Triano.

During the summer, DHSSPS will publish the  NI implementation plan (of the UK rare disease strategy) for  consultation. We’ll have 12 weeks to make copious comments (thanks to Janet B for that one!) emphasising all the things we think are important- access to medication, appropriate referral to specialists, centres of excellence, the importance of translational research, a clinical trials website… and many more! We’ll share the plan here when it’s available, or it will be on the DHSSPS site.

What would you like to do?

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NIHRC: National Inquiry into Emergency Care

The Northern Ireland Human Rights Commission (NIHRC) has launched a National Inquiry into Emergency Care.

The Commission wants to hear from those who have recent experience of Emergency Care, including from patients, carers, and members of staff.  There is a confidential freephone, open from 10 am to 3 pm Monday to Friday, for the next three weeks; or you can complete an online Questionnaire.

The Commission will also be holding Public Hearings in the autumn, across Northern Ireland, to go into more depth on the emerging issues; and will be visiting A & E Departments.

This is a chance to have your say on your experience of Emergency Care, in a confidential, inquisitorial manner, and to help build recommendations for improvement: go to to see full details!

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