Vaincre la Mucoviscidose in english

What is cystic fibrosis (CF)?

 
Cystic fibrosis is an inherited genetic disease that affects the lungs and digestive tract of about 6300 children and adults in France. A defective gene and its protein cause the body to produce unusually thick, sticky mucus that:
- Clogs the lungs and leads to life-threatening lung infections
- Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
  • In France, 1 new-born on 4200 is affected by cystic fibrosis.
  • About 200 babies are diagnosed with cystic fibrosis each year.
  • 2 millions people carry the defective gene (but do not have the disease itself) and can pass it on to their children.
Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. In 1965 the predicted median survival age was 7 years old. Life expectancy at birth is 46 years, in 2007.

About “Vaincre la Mucoviscidose”

 
“Vaincre la Mucoviscidose” is a non-profit organization created in 1965 by parents of children with CF. The foundation follows 4 goals :
  • Cure CF by helping and financing research in France and all around Europe
    The foundation finances around 80 research projects every year and organize CF meeting for French and European CF investigators.
  • Treat right now by improving health care
    More tan 90 medical positions are financed each year in 50 specialised CF centres. Conferences and formations are organized to inform and exchange knowledge among medical staff (physical therapist, nurses etc). Accordingly, constant information about French CF patients is collected to ensure an efficient knowledge of the disease.
  • Improve quality of life in order to make a life with CF more acceptable and bearable
    “Vaincre la Mucoviscidose” offers a continuous help to CF patients and their family by being attentive to their needs and difficulties. It also provides assistance to cover some inevitable expenses a CF patient might have, due to his disease.
  • Alert on the gravity of CF by communicating toward the public in general and towards parents and family affected with CF.
    Every year, the foundation edits several leaflets to help Cystic Fibrosis patients with social, medical and school difficulties. Its website, visited by more than 20 000 visitors each month, gives news and information about the foundation and its people, research and medical care. The foundation also develops information campaign in order to raise awareness information about CF.
95% of our resources come from people’s charity and generosity.
 
Once a year, the last week-end of September, “Vaincre la Mucoviscidose” organises its main event throughout France “Les Virades de l’espoir”. This day is based on the idea that people who can, should give their breath for those who cannot. Sport activities and games are organized everywhere in France to collect money.
 
“Vaincre la Mucoviscidose”, an actor in Europe and around the world.
 
“Vaincre la Mucoviscidose” invests itself in numerous meetings and collaborations with several CF actors in order to increase the knowledge of cystic fibrosis (NACFC and ECFConf).
Every year, members of research and medical department assist to the North American conference, and the European conference.
For the first time, in 2007, “Vaincre la Mucoviscidose” organised the first European CF young investigators meeting in collaboration with non-profit CF organizations such as “Association Muco Vereniging” from Belgium, “Mukoviszidose.ev” from Germany, “Nederlandse Cystic Fibrosis Stichting” from Holland and “Lega Italiana Fibrosi Cistica” from Italy.
 
Vaincre la Mucoviscidose - 181, rue de Tolbiac - 75013 Paris - Tél : 01 40 78 91 91 -