RARE DISEASE DAY 2025
Today is Rare Disease Day, a globally coordinated movement aiming to raise awareness and create change for people living with a rare disease.
Childhood stroke is a rare condition that can significantly alter a family's life. Together with colleagues from the Medizinische Universität Wien, KU Leuven, and Technische Universität Dresden, we investigate the multifaceted impact of this condition on the everyday life of children and families affected by childhood stroke within the BUILD CARE project, which is funded by the European Joint Programme on Rare Diseases (former EJP RD, now ERDERA).
Our focus is on three major and interconnected aspects:
1. The role of the built environment in children's and families' experiences;
2. Cognitive deficits in children following a stroke; and
3. The financial burden that this disease places on families and the healthcare system.
Our newly published Research Protocol (https://lnkd.in/dQysg6YA) details the steps we are taking to investigate this complex topic.
In the final project year, we are looking forward to completing our research and sharing our findings. A key outcome of the BUILD CARE project is the development of an online knowledge-sharing platform. This platform will allow us to share our final research outcomes and provide resources for all interested parties to use for information, design work, teaching, and outreach.
We hope that the results of the BUILD CARE project will be helpful not only to other researchers and health organisations but also to patient advocacy organisations and families affected by this condition.
Read more about the Rare Disease Day here: www.rarediseaseday.org.
