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International Summer School “Rare diseases and orphan drug registries”

September 15, 2014 - September 19, 2014

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”).


September 15, 2014
September 19, 2014


FEDERG Initiative


Daniel Renault
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