The Noelia Foundation cooperates with the Organization CURE CMD, which is the only one that tries to collect all the people affected with CMDs in a unique registry.
We strongly believe that it is important to have an unique registry in order to improve coordination and the use of resources.
• The goal of this record is to list all patients affected by congenital muscular disorders in a single international record.
• This is key to improve the investigation in this field and to enable clinical trials to produce cures and treatments.
• Another of the challenges faced by our foundation is to list, also in this record, all those affected by congenital muscular disorders with collagen VI deficiency.
• We would like to encourage all those affected and their families to sign in to the record, even if their diagnosis is not genetic.