Last Saturday 24th of September 2022, two representatives of the Lama project, Maria Pallarès and Carles Bayod, from Synbio lab along with Dr Jordi Barquinero from Vall d’Hebron Hospital, met the families from the IMPULSAT association in a small meeting where they had the opportunity to share their research progress.
IMPULSAT association is the official Spanish non-profit association representing people suffering from Congenital Merosin-deficient Muscular Dystrophy (CMD1A), also known as LAMA2, a disease that is considered rare because it affects 1:100.000 people and apart from not having a cure, it is chronically debilitating its patients and cannot be prevented.
The meeting that took place in Madrid was focused on starting a new Natural History study about the disease that will deeply characterize it. It was also an opportunity for all the families in the association to feel closer to the research projects that are being developed to find therapies for the disease and a great moment for both parties to put a face to either the disease or the people working on it.
It was definitely a wonderful event and we want to especially thank Dr Laura Coch and Meritxell Torres for having us and giving us the chance to help on this great project they are coordinating.
We are more than happy to be participants in this project and contribute every day to make the cure for LAMA2 a real thing.
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