Rare Disease Day

Each year we support Rare Disease Day on 28th February to raise awareness for the 300,000 people in Ireland living with a rare disease.

It can be exhausting for people with a rare disease, such as EB, to constantly have to explain their condition to others. We want to increase knowledge of EB, especially amongst medical professionals and researchers, so if they meet someone with EB, they’ll have a better understanding of the condition.

Our past campaigns

2025 Over 3,500 messages of support for Casey

Something truly special happened. With your help, we gathered over 3,500 messages from across Ireland to support Casey as she began her journey into secondary school. These heartfelt notes have been brought together in a book that Casey and her mum, Rachel, can turn to whenever they need a reminder of the strength and kindness of the community around them.

Casey was born with the most severe form of EB, recessive dystrophic. From the beginning, Rachel had to become a medical expert overnight — facing the realities of EB head-on. Through it all, Debra and supporters like you have been by their side, helping Casey stay strong in all kinds of ways. Your compassion has made a real difference to their lives.

2024 Liz took a leap for Debra

Lis is a primary school special needs assistant (SNA). She said her first-ever parachute jump has been inspired by the bravery of an Casey, who lives with the most severe form of EB. This year, Liz raised vital funds and awareness for Debra.

2023

This year, we worked with students both at UCD and Yugo to increase their knowledge of EB amongst a younger generation of medical students and researchers, so if they meet someone with a rare disease like EB when working in the community, they’ll have a better understanding of the condition.