Good News!  Our original end March deadline for responses to the “Living Every Day with Rare Disease” Survey has been extended: so we now have some more time to get our voice heard.

If you haven’t done so already, go to the Survey (see the Living Every Day with Rare Disease tab, on the bar above) and complete the survey; or e mail and we will send out paper copies, or arrange for someone to phone you to complete it .

And please pass the word around; get Support Group Members, carers, professionals to complete the Survey too. We need as many responses as we can, to demonstrate that Rare Diseases matter to a lot of people, and to show the impact that they have on people’s lives…

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rare disease symposium

QUB medical students are holding a symposium on rare diseases on 27 March, at 7pm.

For further information, and registration, see below.

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Pictures from RDD Conference

Thumbnail pics of the RDD Conference: if you would like a copy of any of these, email the reference number to by 7th March and we will work out a price: the more people who want a particular picture, the cheaper it will be!



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RDD 2014 Conference


The second Joint North South Rare Disease Day Conference is taking place on 28th February in Riddel Hall, Belfast. This Conference will bring together policy makers, clinicians, service managers and families and people living with rare disease, to look at what is happening and to see how things can be improved in the future. Click here for the agenda for the day.

Register to attend the Conference

If you need financial assistance to help you to attend, from the Republic of Ireland contact Marie Downes ( and from Northern Ireland contact Cathy McKillop (


There are Poster Competitions for children (up to the age of 18) and for medical/technical issues in the field of rare disease.

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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!

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Michael Holden and Fiona Stewart made it to UTV

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“Stronger Together” in action

In Northern Ireland it is estimated that more than 100,000 people will be affected by a rare disease- that’s approx. the size of a city like Derry~ Londonderry. Each condition lacks a critical mass, but collectively, rare diseases are not uncommon.

Andrew and Caroline from Vasculitis ireland

Andrew and Caroline from Vasculitis Ireland


On Monday, 13 January, over 100 service users, carers, health care professionals, policy makers and representatives from the community and voluntary sector came together to encourage people living with a rare disease in Northern Ireland to take part in a regional involvement exercise.

people living with rare disease, clinicians, policy makers and politicians gathered together

people living with rare disease, clinicians, policy makers and politicians gathered together


The ‘Living Every Day with a Rare Disease’ event, hosted by the Northern Ireland Rare Disease Partnership in collaboration with the Public Health Agency (PHA) and the Health and Social Care Board (HSCB) took place at Parliament Buildings and was sponsored by Simon Hamilton MLA.

Marie and Cathy from SHINE

Marie and Cathy from SHINE


The event formally launched the ‘Living Every Day with a Rare Disease’ survey which will inform the development of the ‘Northern Ireland Rare Disease Implementation Plan’. This survey is the first of its kind in Northern Ireland, responses will help shape the way that future services are managed and delivered.


Errol & Marilyn from HDANI, with Gavin McDonnell

Errol & Marilyn from HDANI, with Gavin McDonnell

Our Chair, Christine Collins said, “1 in 17 people in Northern Ireland are affected by a rare disease at some point in their lives. They may be the only person they’ve ever heard of with that condition. They may have to travel hundreds of miles, and across the sea, to see a specialist. Specialist support in the community can be limited. Individual conditions are rare, but collectively, rare diseases are not.   A common feeling is one of isolation. This survey will give people a voice to explain their everyday needs, challenges and the obstacles they face.”

Rosemary from Multiple Systems Atrophy Trust

Rosemary from Multiple Systems Atrophy Trust


Launching the survey Michelle Tennyson, Assistant Director for Allied Health Professions (AHP) and Personal and Public Involvement with the PHA, said: “We are committed to supporting people to tell us what it is like to live with a rare disease, listening to what they tell us and learning how best to provide services to meet their needs.”

Fiona, Darryl, Jenna, Dearbhail, Regina

Fiona, Darryl, Jenna, Dearbhail, Regina


Dean Sullivan, Director of Commissioning at the Health and Social Care Board added: “The findings of this survey will be used to inform the commissioning of health and social care services for patients and clients with rare conditions.”

Christine Collins, Michael Holden & Alison Wilson

Christine Collins, Michael Holden & Alison Wilson


Sharing his experiences with policy makers, Michael Holden said the survey was an opportunity to make sure his experience helped make a difference. “Being diagnosed with a rare disease, in my case Motor Neurone Disease, is life changing.  There are many areas we need to improve in terms of supporting patients. It can be difficult for patient support groups and charities to impact services, so I would ask everyone affected by a rare disease, personally or through a family member, to complete the survey and have their voice heard.”

Complete the survey here:


Register for the rare disease day event on 28 Feb here:


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Rare Disease Day 2014 Booking Now Open!

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Let’s get organised: Three major events!

Long Gallery Reception, 13 January 2014

Simon Hamilton MLA has very kindly agreed to host a reception for the Northern Ireland Rare Disease Partnership, in the Long Gallery, Parliament Buildings, Stormont, on January 13 from 11am to 1pm.
The aims of the reception are:

  • Raise awareness of Rare Diseases;
  • Publicise the “Living Every Day with a Rare Disease” Survey, which will be running through January and February;
  • Give an opportunity for organisations and individuals representing different rare conditions to showcase their information and explain what their condition involves; and
  • Publicise International Rare Disease Day (28 February) and the Joint North South event in Belfast

We need as much publicity and as big an attendance on the day as possible- it’s a unique opportunity to talk to MLA’s; to bring the realities of living with a rare disease to their attention; and to press for meaningful implementation of the new UK Rare Disease Strategy in Northern Ireland.

If you or your organisation wants to attend, please contact me ( as soon as possible – and by 20 December at the very latest!

International Rare Disease Day: 28 February 2014

Following last year’s very successful Joint North South Rare Disease Day event, held in Dublin City Hall, we are now planning for the second such event, to be held in Riddell Hall, Queen’s University, Belfast, on 28 February 2014.
The International Theme for the Day is “Joining Together for Better Care”, and we hope this second Joint North South Event will be both fun, and provide further impetus to the efforts to improve cross border co-operation in health issues. We hope that Ministers from Northern Ireland and the Republic will attend, and that the speakers and discussions will show how progress has been made since last year, in the development of Rare Disease Plans, and in taking forward the theme of “Joining Together for Better Care”.
There will be Poster Competitions, for both medical/scientific and technical issues; and for children to show how living with a rare disease affects them and their family; and during the lunch break, a chance to get to know others and to join in a variety of activities.
We need to get the word out across all our networks to make sure we have a good turnout from across every county; and make this a day to remember with pride; and we will need to have volunteers on hand before and during the event for such tasks as registration, talking to the press, managing the Poster Competitions, etc. So please pass the word around, and contact for information or to volunteer!

Belfast DisabilityPride: 20 September 2014

DisabilityPride is coming to Belfast on 20th September 2014! There will be a carnival parading through the streets to the City Hall, where there will be a concert and retail village.
The overall mission of the Disability Pride Parade is:

  • To change the way people think about and define “disability”;
  • To break down and end the internalized shame among people with Disabilities; and
  • To promote the belief in society that Disability is a natural and beautiful part of human diversity in which people living with Disabilities can take pride.

DisabilityPride Belfast will be a fun filled day where we can meet old friends, make new friends and have a party right in the centre of Belfast.
The movement originally started in Chicago in 2003 and has been spreading around the world, now have been asked to bring it to Belfast, the first and only city in the UK & Ireland to host the event.
Let’s get together and support this initiative! Register now at for news, and to participate, and who knows – maybe we could even have an NIRDP Float….??

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UK Rare Disease Strategy



The Northern Ireland Rare Disease Partnership welcomes the UK’s Rare Disease Strategy, and the commitment it gives to ensuring that no one gets left behind just because they have a rare disease.

How rare diseases, like Muscular Dystrophy, Huntington’s Disease, or Spina Bifida, are diagnosed, treated and managed, so that those affected can live their lives to the fullest possible extent, is important for all of us. Failures in the system lead to wasted resources and needless suffering.

The UK Rare Disease Strategy was developed with the involvement of Patient Groups, Clinicians, academics, and others: we in the Northern Ireland Rare Disease Partnership had a voice in the process. This approach is a step forward in empowering patients and families.

The Strategy provides that that the Northern Ireland Implementation Plan should set out tangible and achievable steps towards:

  • Empowering those affected by rare diseases
  • Identifying and preventing rare diseases
  • Improved diagnosis and prevention of rare diseases
  • Better co ordination of care; and
  • Improved research opportunities and translation of research into practical treatments.

We look forward to working with the DHSSPSNI and Health Authorities, and with colleagues across the UK, Ireland and further afield, to develop the Northern Ireland Implementation Plan, and to make it a reality.

The UK Rare Disease Strategy, signed by all 4 UK Health Ministers, was published on 22 November 2013. A copy of the Government Press Release is available on the Department of Health website

Minister Poots’ Statement will be available on DHSSPSNI’s website

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