1 40 1 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.2471/blt.06.031518" target="_blank" rel="noreferrer">http://doi.org/10.2471/blt.06.031518</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Rare essentials: drugs for rare diseases as essential medicines Publisher An entity responsible for making the resource available Bulletin Of The World Health Organization Date A point or period of time associated with an event in the lifecycle of the resource 2006 Subject The topic of the resource Humans; decision making; Health Services Accessibility; Needs Assessment; Risk Assessment; Cost-Benefit Analysis; Organizational Policy; Public Health Administration; Policy Making; Rare Diseases; Organizational; Resource Allocation; Health Priorities; Drugs; World Health Organization; Essential; Orphan Drug Production; Social Justice Creator An entity primarily responsible for making the resource Stolk P; Willemen Marjolein JC; Leufkens HGM Description An account of the resource Since 1977, the WHO Model List of Essential Medicines (EML), published by WHO, has provided advice for Member States that struggle to decide which pharmaceutical technologies should be provided to patients within their public health systems. Originating from outside WHO, an incentive system has been put in place by various governments for the development of medicines for rare diseases ("orphan drugs"). With progress in pharmaceutical research (e.g. drugs targeted for narrower indications), these medicines will feature more often on future public health agendas. However, when current definitions for selecting essential medicines are applied strictly, orphan drugs cannot be part of the WHO Essential Medicines Programme, creating the risk that WHO may lose touch with this field. In our opinion WHO should explicitly include orphan drugs in its policy sphere by composing a complementary Orphan Medicines Model List as an addition to the EML. This complementary list of "rare essentials" could aid policy-makers and patients in, for example, emerging countries to improve access to these drugs and stimulate relevant policies. Furthermore, inconsistencies in the current EML with regard to medicines for rare diseases can be resolved. In this paper we propose selection criteria for an Orphan Medicines Model List that could form a departure point for future work towards an extensive WHO Orphan Medicines Programme. 2006-09 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.2471/blt.06.031518" target="_blank" rel="noreferrer">10.2471/blt.06.031518</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2006 Backlog Bulletin Of The World Health Organization Cost-Benefit Analysis Decision Making Drugs Essential Health Priorities Health Services Accessibility Humans Journal Article Leufkens HGM Needs Assessment Organizational Organizational Policy Orphan Drug Production Policy Making Public Health Administration Rare Diseases Resource Allocation Risk Assessment Social Justice Stolk P Willemen Marjolein JC World Health Organization