On the 21st and 22nd of June, 2005, I have taken part in the European Conference on rare diseases.

I have moderated, along with Doctor Edmund Jessop, from the British National Statistical Bureau, the debate "Benchmarking Initiatives to Improve Care." During this debate, Dr. Domenica Taruscio, from the Italian National Center for Rare Diseases, spoke on the subject of "Comparison of National Plans and Practices." Professor Dr. Piet van Nuffel, from the European Court, then addressed the topic of "Trans-border Access to Care." Also, representatives from the Danish, Belgian and French referential centers for rare diseases spoke on the topics of practical functioning of these individual referential centers.

According to the World Health Organization, rare diseases are those diseases that affect less than one out of every 2000 EU citizens. Altogether, there are approximately 6 to 7 thousand different diseases in this category. Therefore, in all the EU nations, about 230,000 patients live with each one particular rare disease, and altogether approximately 30 million people suffer from at least one of these rare diseases.

On the two day conference in Luxembourg, numerous professionals from the patient and medical organizations from many of the EU nations shared with the rest their personal experiences in these topics.

More info:
http://www.rare-luxembourg2005.org