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Working with carers across Northern Ireland, Queen’s researchers co-developed this with carers of people living with a rare condition to support themselves and other carers.    

Unpaid family carers are a lifeline for many people living with a rare disease, however caring for a loved one often has significant challenges for carers’ physical, emotional, financial, and social health.

Research confirms at least 11% of Northern Ireland’s residents are unpaid carers which means approximately 290,000 people are saving the Northern Ireland health service more than £16 million per day.   

Almost half of those who provide unpaid care, care more than 90 hours per week, with almost one-third of them proving long-term care for 15 years or more.    

Many carers supporting family members with rare diseases do not identify themselves as carers, instead considering caring an integral responsibility of their role as parents, husband, wife, sibling, or child of the person living with a rare disease.  

While rare diseases may individually affect a small number of the population, one in every 17 people are affected by a rare disease and over 114,000 people across NI are living with a rare disease. Current health and social care systems are not designed to support people with rare diseases and their families.

 Picture above: Dr Wendy Austin cuts the cake with the Caring With Rare Team at the launch of Caring With Rare resource. Included is Â鶹Íø University Co-Leads Professor AJ McKnight, Dr Lynne Lohfeld, and Mr Samuel Robinson.

The content and digital interactive map for was developed through a series of personal discussions, accessible workshops and a fireside chat hosted by Dr Wendy Austin MBE.

Digital stories from carers and other stakeholders also complement online information by offering helpful tips from their personal experiences as short videos.   

Many carers describe being:  

• Medical navigators and advocates, coordinating care across multiple specialties and educating health and social care professionals about their rare disease;  
• Pillars of support during a long, overwhelming journey to diagnosis, when carers face immense emotional and financial strain dealing with misdiagnoses and unnecessary procedures adding uncertainty;  
• Researchers and educators seeking accurate, reliable information about individual conditions, voluntary support groups, and practical help; 
• Burnt out from insufficient emotional, psychological, medical, financial, and social support;
• Demands of 24/7 caring without respite often includes sleep deprivation, physical exhaustion, family conflicts, poverty, and personal sacrifice;
• Peer supporters - "Life can change overnight when support is found - it's transformational."  

This reality underscores the urgent need for practical, effective support to empower carers and to help them access reliable information and guidance as they manage the burden of rare disease care.  

Samuel Robinson, who lives with a rare disease himself, supports multiple generations of family members living with different rare conditions, and Co-Led this project said: “Carers come from all walks of life and every age group; rare diseases do not discriminate. For many carers, supporting a friend or family member with a rare disease is an around-the-clock responsibility of juggling complex medical challenges with day-to-day life, school, and work.

"This vital resource offers practical support, clear information, and guidance to help carers navigate challenges supporting people living with rare diseases."  

Project Co-Lead Dr Lynne Lohfeld, Senior Lecturer in Global Public Health from Â鶹Íø noted:

”It has been an honour to share the journey of co-developing this online information and support resource with rare disease carers in Northern Ireland. It is our sincere hope that it will continue to grow with new information and insights that help lighten their load.”   

Project Co-Lead Professor AJ McKnight, Professor of Molecular Epidemiology and Public Health from Â鶹Íø who also lives with multiple rare diseases highlighted:

“CaringWithRare.org is a carer-led online resource, co-created and delivered with experts, advocates, and researchers. Shaped by voices from our rare disease community, it is designed to empower carers and ease the burden of finding reliable information as they support their family and friends.”  

Dr Claire Cleland, Senior Research & Development Programme Manager, HSC Research & Development Division commented: “Taking into consideration the vital need to support carers of people living with a rare disease, it is wonderful to see this co-developed resource being launched today. It would be my hope that it will empower carers to navigate their rare disease caring journey with greater ease and assurance.”  

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Media inquiries to Sian Devlin at s.devlin@qub.ac.uk