Partnership meeting and AGM, 5 December

It’s time for our Annual General Meeting and partnership meeting- join us on 5 December at the Pavilion, Stormont, Belfast, BT4 3TA.


We’ll be presenting our annual report and accounts for 2016-2017, updating everyone on what we’ve been up to since, discussing the results of the survey on communications, and planning for the way ahead. And, of course, formally launching the Stronger Together project with the Big Lottery Fund!

Research teams from QUB will be helping us to consider educational priorities, and a patient passport.

We’ll start with scones and end with lunch. Will we get a cake?

We’d love you to join us- just register below so we count you in.



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.

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?

Michael’s speech on living with rare disease

One of the most powerful speakers we know is Michael Holden. We were all struck by his speech at Stormont for the launch of the Living Every Day with Rare Disease survey, and are delighted that he has published it on the DisabilityPride website.

Christine Collins, Michael Holden & Alison Wilson
Christine Collins, Michael Holden & Alison Wilson

Having a rare disease is a fight in itself, being excluded form society because access is seen as a ‘have to’ option rather than a ‘like to’ option. The built environment and public services are difficult to access, government don’t want to support us and they don’t want to improve the world for us so that we can support ourselves. It really is hard to win.

We have a rare disease often leading to a disability. We want to live our life in dignity not pigeon holed and placed on a conveyor to the grave.

I’m a husband, a father, a friend, an employer, a fighter, a tax payer, a worker, a Christian, I’m active, I’m Michael Holden, I’m alive and I’m planning to keep it that way.

Find out more about the Disability Pride parade and concert being held on 20th September 2014 here. Start planning your day out!

Happy Birthday to us!

NIRDP is formally one year old today, 13 February.

We were incorporated as a company limited by guarantee on 13 Feb 2012, and are recognised as a charitable company from that date.

Go, us!

Happy Birthday

Many, many thanks to all of you- you’ve donated your time and energy to raise awareness, consider consultations, contact politicians, provide services and training, and add to the ever growing momentum around rare disease issues in NI.

Take a moment to raise a glass of something sparkly to each other, and all those living and working with rare disease.

See you soon!

Fancy a singalong?