Award for Best Oral Presentation by a First Timer - Hunting zebra: retrieving rare disease guidelines

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Published: 2017-01-12

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Jan Manson
Healthcare Improvement Scotland, Glasgow, Scotland
Michele Hilton Boon
Karen Ritchie

Abstract

The EAHIL 2014 conference provided the opportunity to present a piece of work carried out by a team of information
professionals for RARE-Bestpractices (RBP), an international project to promote exchange of information and
knowledge in rare disease. The authors work for Healthcare Improvement Scotland (HIS), a publicly funded
organisation which uses evidence, scrutiny and improvement science to facilitate the delivery of safe, effective and
patient-centred healthcare. HIS is one of fifteen European partners contributing to RBP with our team providing the
core information professional support for the project. Work to develop a rare disease guideline search protocol was
presented in order to raise awareness of RARE-Bestpractices, and to demonstrate the engagement of information
professionals in multidisciplinary research projects.

Article Details

Issue

Vol. 10 No. 3 (2014)

Section

Feature Articles

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How to Cite

1.
Award for Best Oral Presentation by a First Timer - Hunting zebra: retrieving rare disease guidelines. J Eur Assoc Health Info Libr [Internet]. 2017 Jan. 12 [cited 2026 Aug. 13];10(3). Available from: https://ojs.eahil.eu/JEAHIL/article/view/182

References

Sotos J. Zebra Cards. [cited 2014 Jul 30]; Available from: http://www.zebracards.com/a-intro_inventor.html.

European Union. Council recommendation on an action in the field of rare diseases (2009/C 151/02). [cited 2014 Jul 30];

Available from: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF.

Orphanet. Prevalence of rare diseases: bibliographic data. [cited 2014 Jul 30]; Available from:

http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_decreasing_prevalence_or_cases.pdf.

Hilton Boon M, Ritchie K, Manson J. Improving the retrieval and dissemination of rare disease guidelines and research recommendations: a RARE-Bestpractices initiative. Rare Diseases and Orphan Drugs. 2014 [cited 2014 30 Jul]; 1(1). Available from: http://rarejournal.org/rarejournal/article/view/33.

Rare Diseases and Orphan Drugs: an International Journal of Public Health. [cited 2014 Jul 30]; Available from: http://rarejournal.org/rarejournal.