The Socio-Economic Impact of Living with a Rare Disease for Families of Children with Rare Diseases

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

📬 Need More Information? If you have any questions, you can email the PhD researcher:
📧 niamh.buckle@ucdconnect.ie