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Carers - Have Your Say [This survey is now closed]

Our latest project is now up and running seeking input to gain wide-ranging views that provide an insight into the life of a carer for an individual(s) with a rare disease(s). Please do work with us to gather evidence to support local carers.

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 Northern Ireland.

Please Take The Survey


Many people with a rare disease are cared for by a family member.  This can be a challenging role at times due to the nature of the disease and the unique, often complex, care required.  Because they may not be diagnosed with a rare disease themselves, they rarely take the time to consider their own needs.  Neglecting to look after themselves can have devastating consequences on their own health which directly impacts the person they care for.  It is therefore important that strategies are put in place to ensure that carers take the time they need to care for themselves and avail of any support offered to them from the health service, charities or support groups.  

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.

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

Further details are available on our project page.  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 

Photo: AJ McKnight & Julie McMullan
AJ McKnight & Julie McMullan
Centre for Public Health
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QUB rare disease team:
NIRDP advocate, connect, educate, and innovate on behalf of all those living or working with rare disease in Northern Ireland