RARE DISEASE DAY 2023

Every year on the last day of February the globally-coordinated movement 'Rare Disease Day' draws attention and awareness towards equity for people living with a rare disease. With an estimated range between 2.5-13/100,000 incidences per year in childhood, stroke is considered a rare entity. (1) As stroke is usually recognized as a disease amongst the elderly, childhood stroke is rarely recognized in the public realm, despite being within the top 10 causes of death in children. (2) With the BUILD CARE Project, we hope to contribute to the scarce existing research and improve the everyday lives of children and families affected by this disease.

For more information on 'Rare Disease Day' please visit: www.rarediseaseday.org or read more about childhood stroke as a rare disease here.

(1) Hollist, M., Au, K., Morgan, L., Shetty, P. A., Rane, R., Hollist, A., Amaniampong, A., & Kirmani, B. F. (2021). Pediatric Stroke: Overview and Recent Updates. Aging and disease, 12(4), 1043–1055. https://doi.org/10.14336/AD.2021.0219

(2) Steinlin M. A Clinical Approach to Arterial Ischemic Childhood Stroke: Increasing Knowledge over the Last Decade. Neuropediatrics. 2012 Feb 19;43(01):001–9

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