Under a specific commitment delineated in Italy's Health Plan for 1998–2000, the Italian Minister of Health is likely to announce the first national strategic research program on rare diseases this month. The initiative will replace the country's twenty or so disparate projects on rare diseases financed last year with a single research program. Research priorities and centers of excellence will be determined based on the analysis of a national registry of rare diseases, which was started at the end of March. The initiative is intended to tie in with a broader European program on rare diseases that is due to receive approval by the European parliament in the coming weeks.
A rare disease is defined as a one with a prevalence of 1 case per 2,000 people. There are around 5,000 rare diseases affecting approximately 20 million Europeans. Examples include retinoblastoma, neurofibromatosis, Wilms tumor, porphyria, amyotrophic lateral sclerosis and Whipple disease. The new program means that funding for research into these diseases should increase substantially from the IL 10.5 billion (US$ 7 million) allotted to this field last year, according to Donato Greco, from the government's Higher Institute of Public Health.
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