Behind Caring with Rare is a passionate team of carers, researchers, and advocates united by a shared goal: to make life better for those supporting individuals living with rare conditions. Our team brings together professional expertise and deeply personal lived experience, ensuring that every aspect of this project is rooted in understanding, compassion, and authenticity.
Together, we are committed to listening, learning, and creating meaningful change for the rare disease carer community — one story, one connection, and one act of care at a time.
“You think you’re powerless, but you’re not.”
Catherine cares for her husband Brian, who was diagnosed with a rare condition in 2016. She became not just his carer, but his advocate — offering insight into how it is possible to push for the services your loved one deserves.
“It’s possible to do anything if you try.”
Cindy cared for her late husband Barry for 48 years. She highlights how grief can start long before someone passes, and how being a carer doesn’t just stop when they’re gone — it just changes.
“Every difficulty you go through in life provides an opportunity to help someone else in that same situation.”
Gillian is a full-time carer in a very busy, happy household. She is committed to turning her lived experience with rare disease into practical support for others through sharing information, strategies, and encouragement with those on similar paths.
“It took me a long time to accept that I was a carer, because I’m mommy first.”
Una is a parent and full-time carer to two children with complex conditions. Through challenges, she has grown more resilient and finds joy in connecting with others, sharing her story, and singing. Her coping strategies offer valuable insight to fellow carers.
“whilst the diagnosis is rare, what we need very often isn’t rare.”
Sandra is a pillar within the Northern Ireland Rare Disease Partnership and a former carer for her late father, who lived with progressive supranuclear palsy. Through her experience, she advocates for better signposting and connection within the rare disease community.
“Being given the right information as a carer is invaluable and helps going forward.”
Karen cares for her mother while managing her own rare disease diagnosis. She highlights how vital it is to have easily accessible and reliable information to ease the burden on carers and help them feel more supported.
“When people offer things, say yes!”
Kay cares for her sister and supports her niece through her rare disease journey. As a retired nurse, she has advocated for her family and offers practical advice on how to navigate the health and social care system.
Amy Jayne (AJ) McKnight, Professor of Molecular Epidemiology and Public Health, is passionate about improving support for people living and working with rare diseases. Living with multiple rare diseases in her immediate family, she is delighted to co-lead this project, helping those individuals who support their friends and loved ones.
Kerry Longmore is the Community Outreach Impact Officer for the rare disease research team at Queen’s University Belfast. Being a carer herself, Kerry hopes to increase the level of support for carers to those living with rare disease.
Lynne Lohfeld, Senior Lecturer in Global Health at Queen’s University Belfast, is one of the co-leads on this project with rare disease carers. Listening to carers share their experiences has been a privilege as we transformed their journeys into the RD_CaST-NI website.
Nigel Hart is a Belfast General Practitioner with an academic role in Queen’s University. He has been involved in research since he was a trainee, combining clinical and research responsibilities in these roles. Nigel was a co-investigator on this project.
Sam lives with a very rare disease, and his family have different rare diseases. Sam co-leads the RARDTAC (raising awareness of rare disease throughout all communities) initiative, which started in the Ards and North Down area and now has links internationally. Sam is keen to support rare disease carers, who are often caring for multiple people, often multigenerational, with different rare diseases and living with a rare disease themselves. He has led the carer PPIE group, who have been instrumental to creating this resource.
Olinda Santin is a lecturer in Supportive Cancer Care at Queen’s University Belfast and a co-investigator on this project. Olinda launched an online resource created by cancer caregivers for cancer caregivers. Olinda applied her expertise in this area to the development of this project.
Priscilla is a Queen’s University Belfast Centre for Public Health PhD student researching rare diseases. I am honoured to be able to contribute to this project, putting content and sign-posts together to support carers.
Chris is a Queen’s University Belfast, Centre for Public Health PhD Student researching genomics and rare diseases.
Sarah is the Project Manager for Rare Disease projects at Queen’s University Belfast, where they coordinate initiatives that improve research and support for people living with rare conditions. With a background spanning neuroscience, cancer, and ophthalmology, Sarah has contributed to the development of this online resource to support carers of people with rare diseases.
Christine Collins MBE retired from the Civil Service in 2005. Ms Collins was the founding Chair of the Northern Ireland Rare Disease Partnership; a Patient Public Voice representative on the UK Rare Disease Advisory Group from its inception until April 2018; and is actively involved in the development and implementation of both the UK and Northern Ireland Rare Disease Strategies and Implementation Plans.
Heather Dickey is a reader in Economics at Queen’s University Belfast and co-investigator in this project. Heather’s research interests are in the areas of inequality, labour mobility, migration and integration, and policy evaluation.
Fiona McLaughlin was the founding Director of NIRDP and served as Chair from 2016- 2018. Fiona’s background is in education and training, and she was employed in the voluntary sector for 15 years before chronic illness took over. Fiona – ‘I never planned on knowing anything about the rare disease world, but then my mother started falling, having double vision and speech difficulties. There was a prolonged period of many doctors, many tests and an eventual diagnosis of something rare with no treatment, no cure and a baffling name. Progressive Supranuclear Palsy taught the family about delayed and misdiagnosis, speech therapists, orthoptists, movement disorders, PEG feeding, wheelchairs and even Botox. We discovered that although PSP is rare, our experience wasn’t.’
Frank Kee is a clinically trained epidemiologist and public health physician with three decades experience of cohort studies, evidence synthesis and translation. He is a methodologist with experience in diverse fields including genetic epidemiology, diagnostic studies, decision science and health economics. A fellow of the Academy of medical Sciences with a wealth of experience in population research and a co-investigator on this project.
Scarlet Design brings stories to life with expressive hand-drawn and digital artistry. Founder and Managing Director Fran O’Hara is Scarlet Design’s Creative Director and primary Visual Facilitator.
Fran facilitated visual storytelling to design the interactive map, guiding participants to co-create a shared vision.
Are a creative design agency that brings ambitious brands to the next level by transforming their digital business environment. They have brought the ideas of the carers to life in this website.
The Hype Factory are a creative production studio specialising in video and photo production for social & TV. The team recorded all the videos found on the site, taking time and bringing their expertise to capture the stories of all the carers.
