Despite international initiatives on collaboration within the field of rare diseases, patient access to treatment and healthcare services differ greatly between countries.
In most countries rare disease registries are operating with regional, national, European or worldwide coverage while în otgers there is no registry. Collaboration and exchange of best practices among advocates like today's debate is always useful. Progress can be seen, however, and international cooperation and harmonization is slowly but steadily expanding in the rare disease arena. Let's listen some exemples of exchange of information!