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Title: The impact of rare diseases on health related quality of life
Authors: Abbas, Amar
Vella Szijj, Janis
Serracino-Inglott, Anthony
Keywords: Rare diseases -- Diagnosis
Rare diseases -- Patients -- European Union countries
Rare diseases -- Patients -- Unites States
Quality of life -- Health aspects -- Evaluation
Orphan drugs -- Prices
Pharmaceutical policy
Issue Date: 2018-09
Publisher: University of Malta. Department of Pharmacy
Citation: Abbas, 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.
Abstract: A 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.
Appears in Collections:Scholarly Works - FacM&SPha

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