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.
You can register yourself by clicking on the picture and see more information about Cure CMD.