The RARE-Bestpractices Conference  took place in Rome on the 24th of November 2016 at Istituto Superiore di Sanità, Rome, Italy.   The aim of the Conference is to disseminate the results of the RARE-Bestpractices project (http://www.rarebestpractices.eu) and offer a forum for discussion among all …

As part of the capacity building activities of the project RARE-Bestpractices, which intend to promote guideline quality standards for rare diseases across European Member States and to support the upcoming European Reference Networks and Centres of Expertise in the development of their capacity to …

Rare Diseases and Orphan Drugs Journal (RARE Journal) is the official journal of RARE-Bestpractices Project. RARE Journal is a new international open access, online, peer-reviewed journal published three times per year, with no publishing fees. RARE Journal has been substantially redesigned in …

At the occasion of its Membership Meeting held on the 26th of May 2016 in Edinburgh and in the framework of the RARE-Bestpractices project, EURORDIS organised a workshop on: "Good clinical practice in the context of European Reference Networks". The annual EURORDIS Membership meeting gathers about …

The National Institutes of Health (NIH) is a founding member of the International Rare Diseases Research Consortium (IRDiRC). IRDiRC is a key partner for RARE-Bestpractices, both for dissemination of project deliverables and for establishment of international collaborations in the field of rare …