The international congenital muscular dystrophy registry has expanded to include people with congenital myopathy. Read about it here:
http://www.muscular-dystrophy.org/research/news/3628_international_registry_includes_people_with_congenital_myopathies
This is an important step towards improving standards of care and preparing for clinical trials.
Kristina.
More general information about patient registries is here:
http://www.muscular-dystrophy.org/research/patient_registries
New ones are popping up all the time, so we’ll update this page when new ones become available.
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