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.



What’s On: Coming Events..

Just to keep you all informed- here are two of the rare disease related events which are coming up this month!

  1. The second All Ireland Neuromuscular Research and Information Sharing Day is being held in Riddell Hall, Belfast, on 16th May 2015. This event is co-hosted by Muscular Dystrophy UK and Muscular Dystrophy Ireland with registration starting at 9.30 am.
  • Prof Francesco Muntoni will be discussing their clinical centre of excellence and translational research for the benefit of patients, including briefly updating on muscle disease genes and measures for trial readiness.
  • Dr Ros Quinlivan is focusing on their new neuromuscular complex care centre (e.g. and transition.
  • Prof Eileen Treacy from Dublin is providing an update from their National Clinical Programme for Rare Diseases, and Aoife Bradley, from the Northern Ireland Regional Medical Genetics Service will be discussing pre-implantation genetic diagnosis.
  • Afternoon workshops will take place on Disability Sports and Independent Living, finishing the day with a LEGO fundraising event.
  • A parallel, medically-focused discussion session supported by the NIRDP is available with our international experts as requested 2.00 pm – 3.30 pm.

Everyone is very welcome to attend all or part of the day; so please spread the word, and please do register to accommodate catering.

For further information and to register for attendance please contact Demelza at

2. Vasculitis Ireland Awareness have organised the first Vasculitis Conference in Northern Ireland, on “Managing Vasculitis” in the Burrendale Hotel, Country Club and Spa, Newcastle, Co. Down BT33OJY, on Sunday 24th May 2015, 9am-5pm.  

Topics discussed will include:

  • Vasculitis- the Basics: Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James’ Hospital, Dublin;
  • How we can help ourselves: Self help and Symptom Management groups available in NI: Tricia Bowers, Arthritis Care
  • How to get the most from our appointments: Kieran Brogan, Patient Advocate
  • Pain Management: Patricia Mc Crystal, Chartered Counselling Psychologist- Specialist in Persistent Pain, Southern  Health and Social Care Trust
  • Renal Patient View and the Importance of Registries: Dr Damian Fogarty, Consultant Nephrologist Belfast Health and Social Care Trust with special interest in research; and
  • How to improve our Health and Well Being: Dr Caroline Harper, Executive Medical Director/ Director of Public Health, Public Health Agency NI

The cost is £27.50 per person, including  lunch and refreshments.

There will  be information stands on how to access help, benefits, aids and appliances, and information on courses available to help maintain and regain independence.

This event will be of interest to anyone interested in improving management of a long-term chronic condition.

Register online at

For more details contact Julie at 02844 842889


Watch this space for details on the forthcoming Ataxia UK Conference (Radisson Blu Hotel, Gasworks, Belfast; 20 and 21 June 2015); and on NIRDP’s own forthcoming events…





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?

Partnership meeting – get your voice heard!

Recently we’ve been working on a draft of our Strategic Plan, covering the five years from now until 2017. It builds on our initial work in getting the Partnership together 18 months ago, and is based on the contributions of those who were able to attend the Planning Day on 14 June. Work has been done since then to pull everything together, to set it out in a logical order, and to present it all in a way which is easy to read and follow.

What we need now is to:

  • Check that we have included the key things we want to do;
  • Check that what we have described is realistic and achievable: so (for example) if we say we will organise a Family Day in August 2013, that we are fairly confident that we can actually do this, by August 2013;
  • Commit to taking part in making it happen: we need two people for each activity, who volunteer to be responsible for leading and organising that activity; and we need volunteers for each activity, to help the team leaders and take on pieces of work, according to their available time, capacity and skills. For example, when we continue our lobbying campaign with MLA’s we will need to have small groups of Members, including patients/carers, organisational representatives, and ideally health professionals, ready to go and speak to the MLA’s; and we will need to have Members who are willing to write or speak to their own local MLA’s. Similarly, for each of the other activities!

This is your opportunity to make sure you are happy with what is in the Plan: if you have changes to suggest, please e-mail them to by 10 August.
More important, this is your chance to get your name down for the activities you want to participate in! Again, please e-mail saying what you would like to do (e.g. Help with Organising a Family Fun Day; or Lead on scoping our existing connections and thinking about how we can work with others), by 10 August.
Once we have this information, we can finalise the Plan, and get the different activities going, kicking off with our Partnership Meeting on 12 September.

Meeting for anyone interested in rare disease in NI who wants to join the partnership!

Millennium Outreach Centre
400 Springfield Road
BT12 7DU

12.15 Lunch
3pm finish

Please phone Sarah McCandless 0800 917 0222 if you’re attending, so we can count you in for food.