Research institute to probe rare diseases

April 19, 2002

France has a new institute to develop research into thousands of diseases, each of which affects only a few people, writes Jane Marshall.

The institute "without walls" was launched by research minister Roger-Gerard Schwartzenberg in partnership with the ministries of health and industry, heads of public research bodies and representatives of associations dedicated to rare diseases for which there are few or no treatments.

The diseases, many of them genetic, include cystic fibrosis, lupus, Crohn's and forms of cancer and leukaemia. In France each affects only one person in 2,000, but there are up to 7,000 diseases, altogether affecting 4 to 6 per cent of the population, an estimated 3 million people.

Mr Schwartzenberg said that need, not profit, should motivate medical research. He said lack of knowledge about the diseases resulted in incorrect or late diagnosis and failure to treat the sick "because of the absence of drugs which the industry judges it is unprofitable to manufacture".

The institute's 15-member council, which includes four non-French Europeans to reflect its plans to promote European cooperation, will commission and evaluate research in areas including genetics and stem cells. It will coordinate action between public research bodies such as the CNRS (national council for scientific research), Inserm (health and medical research institute) and the Centre National de Genotypage.

Alain Fischer of the paediatric immunology and haematology service at the Necker children's hospital in Paris will head the institute. He led the team that pioneered gene treatment for boys born with severe combined immunodeficiency-X1 who lack white blood cells crucial for defence against infection and must live in sterile conditions.



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