RARE-Bestpractices presence at conferences

RARE-Bestpractices presence at conferences

The team from Healthcare Improvement Scotland have had a busy summer promoting RARE-Bestpractices. In July Michele Hilton Boon and Jan Manson attended the Chartered Institute of Library and Information Professionals annual Health Library Group conference to Oxford, England and presented a well received session on information skills in rare disease projects.  Jan also travelled to the European Association of Health Information and Libraries (EAHIL) conference in Rome to give an overview of RBP and progress in WP4. “Her talk was awarded the prize for best presentation by a conference first time attendee and a summary article of the presentation has been published in the next edition of the EAHIL journal”.


Furthermore the team of Healthcare Improvement Scotland (HIS), Jamarau Ltd, and  Istituto Superiore di Sanità (ISS) prepared a poster which was presented by Paola Laricchiuta (ISS) on behalf of all the authors at the  80th IFLA World Library and Information Congress “Libraries, Citizens, Societies: Confluence for Knowledge” held in Lyon (France) from 16 to 22 August 2014.

The poster focused on the progresses related the development of the guidelines and research recommendations databases (WP4, leader HIS). A particular emphasis was placed on the possible uses of both databases and on the opportunity for the wide community of librarians and information professionals to benefit from an up-to-date new resource for finding, sharing, developing and disseminating evidence-based documents on rare diseases.

Healthcare Improvement Scotland also presented a poster at the 7th European Public Health Conference "Mind the Gap: Reducing inequalities in health and healthcare" held in Glasgow in November 2014. The poster described the RARE-Bestpractices project and how it might address the issue of inequality of care for those with rare diseases across the European Union as a result of variation in practice and local expertise.

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