International Summer School “Rare diseases and orphan drug registries”

The School will take the participants through the main concepts and methodological steps that must be undertaken in the establishment and management of a rare disease registry and to ensure its usefulness, scientific soundness and sustainability.

Who should attend: researchers, clinicians, experts in statistics, experts in bioinformatics, health authorities,policy makers, academics, other relevant experts, students and patient organizations, who are involved or intend to establish a rare disease patient registry.

No registration fees.

Further information will be available soon at: www.iss.it/cnmr (Section “In rilievo”).