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https://www.um.edu.mt/library/oar/handle/123456789/51176| 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. |
| URI: | https://www.um.edu.mt/library/oar/handle/123456789/51176 |
| Appears in Collections: | Scholarly Works - FacM&SPha |
Files in This Item:
| File | Description | Size | Format | |
|---|---|---|---|---|
| The_impact_of_rare_diseases_on_health_related_quality_of_life_2018.pdf | 760.13 kB | Adobe PDF | View/Open |
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