Persistent suffering: Living experiences of patients with rare disease: An interpretative phenomenological study

Author:

Jouybari Leila,Rezaei Fatemeh,Sanagoo Akram,Peyrovi Hamid

Publisher

Medknow

Subject

Education,Medicine (miscellaneous)

Reference29 articles.

1. Pathology as a phenomenological tool;Carel;Cont Philos Rev,2021

2. Networking for rare diseases: A necessity for Europe;Aymé;Bundesgesundheitsbl,2007

3. Rare Diseases Foundation of IRAN. Available from: https://radoir.org/en. [Last accessed on 2022 Aug 16].

4. Rare Diseases: Understanding This Public Health Priority. European Organisation for Rare Diseases (EURORDIS). November 2005. Available from: https://www.eurordis.org/wp-content/uploads/2009/12/princeps_document-EN.pdf. [Last accessed on 2022 Aug 16].

5. Kole A, Faurisson F. The voice of 12,000 patients: Experiences and expectations of rare disease patients on diagnosis and care in Europe. 2009. Available from: https://www.eurordis.org/wp-content/uploads/2009/12/EURORDISCARE_FULLBOOKr.pdf. [Last accessed on 2022 Aug 16].

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1. A Sociology of Plasma Proteins – A Technocrat's Perspective;International Journal of Social Determinants of Health and Health Services;2024-08-14

2. Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course;Orphanet Journal of Rare Diseases;2024-07-22

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