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https://www.um.edu.mt/library/oar/handle/123456789/51249| Title: | Access to orphan drugs and quality of life in rare disease |
| 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: | 2018-10 |
| Publisher: | University of Malta. Department of Pharmacy |
| Citation: | Abbas, 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. |
| Abstract: | A 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. |
| URI: | https://www.um.edu.mt/library/oar/handle/123456789/51249 |
| Appears in Collections: | Scholarly Works - FacM&SPha |
Files in This Item:
| File | Description | Size | Format | |
|---|---|---|---|---|
| Access_to_orphan_drugs_and_quality_of_life_in_rare_disease_2018.pdf | 353.16 kB | Adobe PDF | View/Open |
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