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Goals

  • The main purpose of the Foundation is to support scientific research of this disease to prolong the life of these children and find out a treatment or cure for the disorder.
  • To introduce and bring the reality of this unknown disease to the society.
  • Raise funds for research in order to start and improve clinical trials.
  • Gathering the maximum number of patients with Congenital Muscular Dystrophy with Collagen VI Deficiency and their families to work in coordination to achieve possible solutions to fight against the evolution of the disease as well as understand its evolution. The families’ registrations are vital for that purpose.