Calling Parents and Guardians of Children with Rare Diseases!

Do you care for a child with a rare disease in Ireland or Northern Ireland? We want to hear from you.

Researchers at University College Dublin are conducting a study to understand the financial, emotional, and social impact of having a child living with a rare disease – directly from the families who know it best.

💡 This survey was developed in collaboration with experts and parents of children with rare diseases across Ireland and Northern Ireland to ensure the questions reflect real-life experiences and challenges.

This 30-minute anonymous survey is your chance to share your experiences and contribute to research to help shape better support and services for families like yours.

✅ Open to parents and guardians
✅ Fully anonymous
✅ Takes around 30 minutes
✅ Your voice matters

👉 Click here to take part! https://healthandagriscience.fra1.qualtrics.com/jfe/form/SV_7R7RTr9J79sxBB4
Or scan the QR code in the flyer attached!

Thank you for helping to make rare disease voices heard. 💙

Parents & Guardians of Children with Rare Diseases – We Want to Hear from You!

Researchers at University College Dublin are running a survey to understand the financial, emotional, and social impact of raising a child with a rare disease. Your voice is essential.

Families often face significant challenges, from high healthcare costs and unpaid caregiving to job disruption and emotional strain. A recent review by the research team found that:

• Children often need multiple specialists, increasing costs.

• The more dependent the child, the greater the financial burden.

• Essential items like bandages or special diets are not always covered by insurance.

• Parents often miss work or leave jobs to provide care.

• Out-of-pocket costs remain high, even with insurance.

This anonymous survey, developed with parents and experts across Ireland and Northern Ireland, takes about 30 minutes and reflects real-life experiences.

The more we understand the realities families face – from out-of-pocket costs to social isolation – the stronger our case for change and better support systems. By sharing your experience, you are supporting research that aims to contribute to better rare disease supports and services for families in the future.

Take the survey: Rare Disease Family Survey
Questions? Contact: niamh.buckle@ucdconnect.ie 

Thank you for helping make a difference.