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Joan J. Guinovart’s lab at IRB Barcelona forms part of a recently launched international consortium that seeks to find a treatment for Lafora disease (Photo: IRB Barcelona).

The United States brings together five labs worldwide to study a fatal form of epilepsy

Scientists from the US, Canada and Spain, among them Joan Guinovart from IRB Barcelona, are poised to perform joint research with the aim to find a treatment for Lafora disease, the most severe type of epilepsy in humans. Joan J. Guinovart’s lab at the Institute for Research in Biomedicine (IRB Barcelona) –based at the Barcelona Science Park–  forms part of this recently launched international alliance. The National Health Institutes has awarded the consortium $8.5 over five years. The US organisation Chelsea’s Hope, a charity formed by families affected by this disease, has promoted this international collaboration.


Headed by the University of Kentucky (US), the project has received $8.5 M (7.7 M€)  of funding from theNational Institutes of Health (NIH) for the next five years. The project took shape with the help ofChelsea’s Hope, a charity organisation formed by families in the US affected by Lafora disease and that, in 2014, brought together leading experts working in different aspects of this disease.

Lafora disease is a hereditary neurodegenerative condition in which the first epileptic seizure occurs during adolescence, between the age of 10 and 17 and for which no treatment is available. The disease involves the progressive degeneration of the nervous system, with patients deteriorating into a vegetative state and dying some ten years after its onset.

The research team comprises labs headed by Matthew Gentry, at the University of Kentucky —leader of the consortium who will be supported by Pascual Sanz at the Instituto de Biomedicina de Valencia of the CSIC—, by Berge Minassian at the Hospital for Sick Kids in Toronto, Canada, by Peter Roach at the University of Indiana, in the US, by José Serratosa at the Hospital Universitario Fundación Jiménez Díaz de Madrid, and by Joan Guinovart at IRB Barcelona.

“We have all been studying Lafora disease for over ten years and we have come together to work towards a breakthrough. It is great that the initiative arose from families,” highlights Joan Guinovart, who is also a professor at the University of Barcelona. “Only by joining forces can we find solutions to rare diseases like the one we are dealing with,” he says.  

• More information on IRB Barcelona website [+]