Origin and Mission

Aux Pas Du Cœur Association was born from the will of a family of which three (3) sisters were affected by a rare neuromuscular disease. The first two have never been diagnosed in Cote d'Ivoire. The third, having been diagnosed with GNE myopathy in Italy,a rare degenerative neuromuscular disease, decided to set up an organisation of people living with rare neuromuscular diseases in Cote d'Ivoire.

Our organization wants to educate and awareness on rare diseases in Cote d'Ivoire. Our mission is to:

  • Raise awareness and advocate to help the diagnosis and treatment of patients free of charge.
  • Request and/or contribute to actions related to the training of the medical profession so that doctors are able to make a final diagnosis and ensure the continuous follow-up of patients.
  • Create a patient registry to establish very precise statistics on rare diseases in Côte d'Ivoire.
  • Create a cohesive patient community.
  • To break the isolation and despair of patients and their families.
  • Open to the world and actively contribute to international research for treatments.

Annual Programs

  • Myology school
  • Free Screenings
  • Conference (Symposium)
  • Rare Diseases "City Tour"