Patient Organisation

LAMA2 France

LAMA2 France, Contre les dystrophies musculaires par déficit en mérosine (Against merosin-deficient muscular dystrophies), was created in February 2021 by three families: Flora and Stéphane Talec, parents of Olivier, Séverine and Cédric Berreur-Parmentier, parents of Nathanaël, Céline and Koen Damon-Beeckaert, parents of Tess.

Our children are representative of the heterogeneity observed in this disease, which allows us to deeply understand the daily challenges that families face: Olivier has a very severe form, Nathanaël and Tess have partial forms (meaning their body produce some merosin/LAMA2 protein).

Our primary and ultimate goal? Treatments. Treatments that would stop the progression of the disease or reduce its severity. Treatments that would be accessible not only to newborns or young children but also to adults, because every slight gain in autonomy and well-being is worth it.

After only a few months of existence, we initiated the launching of a prospective Natural History Study and of a LAMA2 French patient repository, both essential prior to any clinical trial, with the support of the other French actors – clinicians, researchers, and the Association AFM-Téléthon (French Association against Myopathies -neuromuscular disease)

And this is just a start! Our next goals are to continue to raise awareness about our very rare disease, to support clinical research and promising therapeutic pipelines on LAMA2 related dystrophies and to strengthen networking with other European and international ‘sister’ associations.

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