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Please use this identifier to cite or link to this item: https://www.um.edu.mt/library/oar/handle/123456789/51176
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dc.date.accessioned2020-02-04T08:24:41Z-
dc.date.available2020-02-04T08:24:41Z-
dc.date.issued2018-09-
dc.identifier.citationAbbas, A., Vella Szijj, J., & Serracino Inglott, A. (2018, September). The impact of rare diseases on health related quality of life. Poster session presented at the 78th FIP World Congress of Pharmacy and Pharmaceutical Sciences, Glasgow, United Kingdom.en_GB
dc.identifier.urihttps://www.um.edu.mt/library/oar/handle/123456789/51176-
dc.description.abstractA poster presentation regarding the impact of rare diseases on health related quality of life. Introduction: Over 7000 Rare Diseases (RDs) affect around 60 million patients living in the European Union (EU) and the United States (US). 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. RDs are chronic and result in a decreased Quality of Life (QOL). Aims: To develop a QOL assessment tool for RD patients to identify issues of accessibility, diagnosis, information provision at the time of diagnosis, personal care and independence and mental health.en_GB
dc.language.isoenen_GB
dc.publisherUniversity of Malta. Department of Pharmacyen_GB
dc.rightsinfo:eu-repo/semantics/openAccessen_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.titleThe impact of rare diseases on health related quality of lifeen_GB
dc.typepresentationen_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.description.reviewedN/Aen_GB
dc.contributor.creatorAbbas, Amar-
dc.contributor.creatorVella Szijj, Janis-
dc.contributor.creatorSerracino-Inglott, Anthony-
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