Who are we ?
We are an association of families impacted by LAMA2 Congenital Muscular Dystrophy, also known as merosin deficient muscular dystrophy, or MDC1A.
Our goals are to:
list all European french speaking patients (France, Belgium, Luxembourg, Switzerland, Monaco...) that could benefit from a cure or treatment for merosin deficiency muscular dystrophy.
get in touch and establish relationships with clinicians, hospitals, industrials, other non-profits who could work or help in any way on possible cure / treatment for merosin deficient CMD.
inform the LAMA2/merosin deficient community of ongoing research and studies on the disease.