Face àla mucoviscidose
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Half a century of progress
From 1965 to the present: the advances made
Since its creation, Vaincre la Mucoviscidose has enabled considerable advances to be made in relation to the lives of patients and their families, thanks to the commitment of healthcare providers and researchers working alongside it. The most indicative figure is that concerning life expectancy. It used to be 7 years for children born in 1965, and is now close to 50 years for those born today.
• 1965 - Creation of the AFLM (French Cystic Fibrosis Association).
• 1967 - 100% cover for the disease by the French Social Security.
• 1972 – Creation of a research fund by the AFLM.
• 1978 - The association is officially recognized as a public-interest organization
• 1982 - First international meeting of adults with cystic fibrosis.
• 1985 - First Walk of Hope in Auvergne called “Virade de l’espoir”
• 1988 - First lung transplant.
• 1989 - Discovery of the cystic fibrosis gene.
• 1992 - Creation of ONM (French National Cystic Fibrosis Observatory)
• 1994 - Gene therapy and cystic fibrosis. First test in humans in France.
• 2001 - In order to demonstrate its commitment, AFLM is renamed "Vaincre la Mucoviscidose".
• 2002 - Implementation of neonatal screening and the 49 CRCMs (Cystic Fibrosis Resource and Competence Centres).
• 2005 - Publication of the Livre Blanc (White Paper) with 60 concrete proposals. All the stakeholders in Vaincre la Mucoviscidose: parents, patients, members, volunteers and paid professionals work every day to ensure that these proposals are completed by 2010
• 2006 - Labelling of the 2 reference centres in Lyon and Nantes. Protocole National de diagnostic et de soins [National Diagnosis and Care Protocol] (HAS)
• 2006 - The ONM becomes the French Cystic Fibrosis Registry and keeps a record of all patients and the major events concerning them in order to enable epidemiological studies and contribute to Research by helping researchers gain access to high-quality clinical data.
• 2011: 48.7% adults
• 2012: almost 50% adults (49.6%)
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