Patient Organisation

Stichting Voor Sara

The Dutch based Voor Sara foundation was founded at the end of 2016 by the parents of young girl named Sara who lives with LAMA2-CMD.

Since then, Voor Sara has already made LAMA2-CMD research possible at the University of Maastricht and the Radboud University at Nijmegen, both situated in The Netherlands.

The overarching aim of the foundation is to bring the leading medical researchers and doctors as well as patients and their families together, to promote and accelerate the development of treatments and cures.

In 2019, Stichting Voor Sara organised the first international conference on LAMA2-CMD which brought together the leading doctors, researchers and therapists to discuss how to best advance LAMA2-CMD research internationally. A summary video of this conference can be found here.

The foundation also played a key role in bringing together all the European patient associations to build this collective website.

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