Programme details

29 February 2008 will be the first celebration of the European Rare Disease Day; a Public Hearing on Rare Diseases will take place on March 4th at the European Parliament. Important advances in the research for rare diseases were made at the International Centre for Life in Newcastle. Prof. Volker Straub, is coordinating the European network of excellence for rare inherited neuromuscular diseases. Beside the research, the International Centre for Life treats patients affected by rare diseases coming from UK and other countries.
There are between 5000 and 8000 distinct rare diseases today, each affecting approximately 246000 people in the EU. Genetic research is fundamental to diagnose the diseases, for which there is currently no cure.
Several research centres in Europe are about to start the first clinical trials on humans to find pharmalogical treatments for rare diseases.