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dc.identifier.citationAbbas, A., Vella Szijj, J., & Serracino Inglott, A. (2018, October). Access to orphan drugs and quality of life in rare disease. Poster session presented at the ACCP Global Conference on Clinical Pharmacy, Seattle, Washington, USA.en_GB
dc.description.abstractA poster presentation regarding access to orphan drugs and quality of life in rare disease. Introduction: Over 7000 rare diseases (RD) affect around 300 million patients worldwide. More than 80% of RDs are genetic and appear early in life, resulting in a 30% mortality rate in children diagnosed before their fifth birthday. To date, there has been no locally conducted study about the healthcare needs of people living with RDs. Research on RDs focuses on treatment and care of RDs with limited focus on health related quality of life and accessibility to Orphan Drugs (ODs). Aims: To analyse what regulations and policies related to OD accessibility are available in Malta and internationally. To assess the Quality of Life of RD patients.en_GB
dc.publisherUniversity of Malta. Department of Pharmacyen_GB
dc.subjectRare diseases -- Diagnosisen_GB
dc.subjectRare diseases -- Patients -- European Union countriesen_GB
dc.subjectRare diseases -- Patients -- Unites Statesen_GB
dc.subjectQuality of life -- Health aspects -- Evaluationen_GB
dc.subjectOrphan drugs -- Pricesen_GB
dc.subjectPharmaceutical policyen_GB
dc.titleAccess to orphan drugs and quality of life in rare diseaseen_GB
dc.rights.holderThe copyright of this work belongs to the author(s)/publisher. The rights of this work are as defined by the appropriate Copyright Legislation or as modified by any successive legislation. Users may access this work and can make use of the information contained in accordance with the Copyright Legislation provided that the author must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the prior permission of the copyright holder.en_GB
dc.contributor.creatorAbbas, Amar-
dc.contributor.creatorVella Szijj, Janis-
dc.contributor.creatorSerracino-Inglott, Anthony-
Appears in Collections:Scholarly Works - FacM&SPha

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