BRUSSELS, Belgium - Despite the fact that 80 percent of rare diseases are genetic in origin, the European Union (EU) draft program for orphan drug research has largely omitted them, according to Guido Viceconte of the European Parliament's (EP) public health and consumer protection committee.
Viceconte, the EP's rapporteur in its debates on the EU's latest plans for rare diseases, argued any action program in this area should be slotted into a coherent policy covering orphan drugs and rare disease research.
The EU is proposing a new action program to run from January 1999 to December 2003 with a budget of ECU14 million, to improve health protection against rare diseases. But the EP is criticizing the approach for failing to build what it says are the obvious links between regulation on orphan medicinal products and research on rare diseases. - Peter O'Donnell