Collaborators organize inspiring STXBP1 patient day in Denmark

September 28, 2019

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STXBP1 patients, researchers and physicians came together in Dianalund, Denmark on September 20. The STXBP1 day served as an opportunity to meet other patient families, talk to physicians and hear about the current STXBP1 research lines.

The STXBP1 patient day was organised by the Danish Epilepsy Centre, Filadelfia (link filadelfia). As the only tertiary epilepsy center in Denmark, the Filadelfia has seen many STXBP1 patients over the years. The group of Danish and Norwegian STXBP1 families was brought together to provide an opportunity to meet eachother and exchange experiences. In addition, patients could participate in ongoing research investigations. Involved researchers gave several short presentations to update the patient families on ongoing STXBP1 research. The work of the Amsterdam STXBP1 team was presented by VU PhD student Hanna Lammertse.

Physicians at the Danish Epilepsy Centre are actively involved in STXBP1 research. Together with the research groups of Jakob Sørensen at the University of Copenhagen (link Sorensen lab) and Matthijs Verhage at the Vrije Universiteit of Amsterdam, the team has been awarded a grant from the Lundbeck foundation (link Lundbeck). In this project, the multilevel assessment of STXBP1 patients from multiple countries will be brought together to better understand the disease and provide new ideas for therapeutic approaches.