The Spanish Federation for the Care of Rare Diseases has been set up by people with uncommon diseases to unite efforts, ensure that better care is provided to people with these diseases, and to gain funding for research into new drugs.
The members are trying to raise the awareness of rare disorders among health authorities, healthcare professionals, and research centres because, they say, they suffer from a lack of effective treatments and difficulties in getting rapid and accurate diagnosis.
Rosa S?nchez de Vega, the federation's president, explained that the federation had already been recognised by the European Union's rare diseases programme (8 May 1999, p 1234).
The European Union programme has approved setting aside 14 million euros for the period 1999-2003, which is to be distributed among its 15 countries. The diseases covered by the foundation mainly consist of genetic or hereditary ones such as Gaucher's disease or Huntington's chorea.
The union defines a disease as a rare disease when it has a prevalence of 1 case per 2000 people or less. The European Union's programme includes funding to enable orphan drugs—that is, drugs which under normal circumstances would not be developed because the demand is so small—to be developed
Genzyme, a US biotechnology company, is one of the few companies doing research in to orphan drugs for rare diseases, mainly for Gaucher's disease.
In addition to promoting research and treatment, the union's plan will also create a European database on rare diseases, which will include a description of each disease, its symptoms and aetiology, information on standard treatments and treatments under research.
