Rare Disease Information Survey: We Want Your Feedback!

Hello all!

Can we ask you to take a moment to participate in, or share our survey?

This survey is to help evaluate public awareness of rare diseases, alongside related information and educational resources available for patients, their families, and healthcare professionals in Northern Ireland.

This particular survey is aimed at individual or collaborative groups (this includes a voluntary group, support group, charity etc) and is being conducted as part of the evaluation phase of key priorities for action in the NI Rare Diseases Implementation Plan. Results from this survey will be collated anonymously and used to help improve the accessibility of resources and addressing the needs of individuals affected by rare disease(s) in Northern Ireland. We know many groups have fabulous information resources and are keen to locate existing resources, as well as identify gaps where the development of further resources would be appropriate.

Please do indicate if you are happy to be contacted (which will be addressed in question 4) should there be follow-up questions. We appreciate and welcome your input to this evaluation.

If you wish to provide further details and / or have any questions about this survey, please contact julie.mcmullan@qub.ac.uk using ‘Survey groups’ in the subject line.

It is not essential to answer every question! Complete survey data is most useful to us, but we understand you may not wish to disclose (or have time to complete) some information – please feel free to skip over any such question(s).


Posted in Uncategorized | Leave a comment

Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March


Rare Disease Day is coming !  This year, we are looking forward to welcoming you to the fourth Joint North South Rare Disease Day event, held with our friends the Irish Rare Disease Taskforce, on 5 March 2018 in the splendid surroundings of QUB’s Riddel Hall, Stranmillis Road, Belfast.

The Theme for this year’s Rare Disease Day is Research; and the Joint North South Conference will focus on:

  • Rare Disease and the UK and R.o.I Strategies
  • Expert Patients: Engaging with Research: EUPATI UK and RoI
  • Patients and Researchers: examples of good practice
  • Beyond the 2016 to 2020 Strategies: Next Steps

We are still working on the Programme, so watch out for updates!

Register now (FREE)  here






Posted in Events, Rare Disease Implementation Plan, Uncategorized | Tagged , , , | Leave a comment

An Honour

We are delighted to share the news that our volunteer Christine Collins, has received the honorary award of MBE from Her Majesty The Queen today for her outstanding services to people with rare diseases.

Christine Collins, MBE

Christine, a retired civil servant, is well known for her role as the founding Chair of the Northern Ireland Rare Disease Partnership in 2011 as well as being a widely respected former NI Human Rights Commissioner and winner of 2017 CO3 Trustee of the Year award.

The New Year Honours lists 2018 recognise the achievements of a wide range of extraordinary people across the UK.

Christine comments “It is such a great honour to be recognised with this award; I am absolutely thrilled. I also feel grateful to be able to help bring to light the issues for those who are living with or affected by rare conditions across Northern Ireland.”

Current Chair of the Charity, Fiona McLaughlin adds “We feel incredibly proud of Christine and are delighted that all her hard work has been recognised in this way. Christine has been at the heart of our charity for many years and works tirelessly to ensure that no one should be disadvantaged because of the rarity of their condition.”

Posted in Updates | Tagged , , | Leave a comment

Queens University “Patient Passport” Study 

The Northern Ireland Rare Disease Partnership are supporting a research study being run by Queens University called the “Patient Passport”.  This study is researching the benefits of a document that people who manage a rare condition can carry around with them. The document details all the necessary information about their condition, their needs and their daily life and support mechanisms.

Queens are recruiting at present for participants in the study and wondered whether you might know of an individual who would be interested in taking part in this initiative, or whether you might be happy to share information on this initiative with any relevant contacts.

This study, if successful could have a very positive impact on improving communication between a wide range of organisations for people with complex health needs.  Something to be truly welcomed.

We hope you find this as interesting as we do!

Please get in touch with us on info@nirdp.org.uk if you would like further information.

Posted in Uncategorized | 5 Comments

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.

This slideshow requires JavaScript.


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.



Posted in Events | Tagged , , , , , | Leave a comment