Every week in Europe 20 to 40 children are born with a form of rare disease called leukodystrophy that attacks and destroys the central nervous system (brain and spinal cord) in children and adults.
But research is improving thanks to a € 26 200 donation made in 2018 to the European Leukodystrophies Association (ELA). The entire amount was allocated to a research project carried out by Tanja Kuhlmann (Germany) on one of the most frequent leukodystrophies, the Syndrome of Childhood Ataxia with Central Hypomyelination. In the most severe variant of this hereditary disease, patients die within 24 months after birth and as yet there is no effective treatment. Completed in April 2020, the research project has contributed to a better understanding of the mechanisms of this disease.
Founded in 1992 in France, the European Leukodystrophies Association (ELA) raises public awareness, assists and supports families affected and stimulates the development of research into these rare, progressive, metabolic, genetic diseases. In a field where public funding is scarce and the pharmaceutical industry’s investments are even smaller in view of the low commercial interest, ELA is the leading provider of leukodystrophy research. To date, 537 research projects have been funded for a total of € 45,5 million.
Picture from 2018 showing ELA France’s President Guy Alba and then EIB Vice President Emma Navarro