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Carers Project Details

Carers - Have Your Say: Thank You, Research Published 2021

Caring for someone with a rare disease: An insight into the life of a carer for an individual with a rare disease(s).

Paper Published 2021! This survey is now closed and we look forward to presenting results later in 2020. We are excited to announce that our 2019 survey for carers is now OPEN - please help us record what carers for people with a rare disease experience and would like to see improved across NI.

Please Take the Survey

The final version of our peer-reviewed, published paper is available to view at the following links: ; Carer reported experiences: Supporting someone with a rare disease - McMullan - - Health & Social Care in the Community - Wiley Online Library

McMullan, J., Crowe, A., Downes, K., McAneney, H., McKnight, AJ. (2021).  Carer reported experiences: supporting someone with a rare disease. Health and Social Care in the Community, early online version.

This summary document of available resources identified through our RARDTAC project may be downloaded from here: Support for Rare Disease Carers in Northern Ireland — Queen's University Belfast (  

Many thanks to everyone who contributed ideas, data, and helped with this project


This survey is now closed and we look forward to presenting results of this project later in 2020.


We are excited to announce that our 2019-2020 survey for carers is now OPEN and can be accessed by following this link or just point your smartphone camera at the barcode below and it should take you to the survey.

Through this project we are hoping to explore the challenges carers face when looking after someone with a rare disease and identify how they could be better supported.  To be eligible to participate in the survey participants must be over 18 years old and currently be caring for someone with a rare disease.

We hope this project will raise general awareness of rare diseases as well as improve situations for those who care for the individuals living with these conditions.

sign with about us held in hands     

This project was initiated by Dr Julie McMullan and is being worked on by Julie, Kirsten and AJ as members of QUB's rare disease research team in collaboration with the Northern Ireland Rare Disease Partnership

This project has research ethical approval from QUB's Faculty of Medicine, Health & Life Sciences. 

A participant information leaflet can be accessed at this link: Final carers 2019 PIL which provides further details on what the study is aiming to do as well as what participants will be asked to do should they decide to participate. 

If you require any further information, or wish a copy of the survey to complete in a different format or in hard copy, please do not hesitate to Contact Us