ASSESSING AWARENESS OF RARE DISEASES AMONG HEALTHCARE PROFESSIONALS: AN EXPLORATORY STUDY ABOUT SUDAN

Abstract

This study focuses on healthcare professionals’ awareness regarding rare diseases in Sudan. Emphasizing the notable deficiency in awareness and knowledge among healthcare practitioners concerning rare diseases is critical, considering these ailments' complex nature and rarity. This thesis relies on qualitative analyses to evaluate the level of awareness, diagnostic procedures, and treatment accessibility as perceived by healthcare professionals in Sudan. The study outlines broader consequences of limited awareness of rare diseases on diagnostic odyssey and the significant challenges in accessing suitable treatment options. It emphasizes the urgent necessity of enhancing educational programs, cultivating a deeper comprehension of rare diseases within the healthcare community, and advocating for policy modifications to enhance the infrastructure for rare disease care. The thesis develops an argument for a collaborative endeavor to enhance the quality of care for rare disease patients. Finally, policy recommendations to strengthen awareness are organized using Wu et al. (2015) conceptualizations of capacity to delineate crucial domains for intervention, such as enhancing the medical curriculum, advocating for ongoing professional growth, and incorporating awareness of rare diseases into public health initiatives. The argument presented asserts that through heightened awareness among healthcare practitioners, Sudan has the potential to achieve substantial progress in diagnosing, treating, and managing rare disease patients, ultimately contributing to the global rare disease discourse and public health policy.

Date of Award	2024
Original language	American English
Awarding Institution	HBKU College of Public Policy