Objective: To identify the challenges of managing Huntington’s disease in Egypt in order to overcome them.

Background: Huntington’s disease (HD) is considered a rare disease which is underreported in Egypt. It represents a great challenge for health professionals and public. For better understanding of the disease we need to know more about it and available resources for its management in the country.

Method: we designed an introductory course about HD and asked the participants upon registration a question about the challenges of managing HD in Egypt, all valid responses were reported.

Results: Among 140 registered participants (neurologists, non-neurologists, medical students, family members) 122 answered the question, responses mainly included: late diagnosis (31.9%) or misdiagnosed cases, unavailable treatment and no cure (21.3%), lack of awareness about the disease among physicians and public (19.6%), the genetic testing is inadequate, not present in every center (12.3%), lack of multidisciplinary and supportive care (12.3%), less frequent responses included; lack of experienced specialists, rare disease without funding for researches, no specialized centers, lack of facilities for the patients and their families.

Conclusion: Awareness is needed in Egypt for early diagnosis and management of Huntington’s disease, together with more resources to build up teams and specialized centers to provide the best care for the patients and families. To overcome these challenges we need more educational and research resources, as well as international collaboration.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/huntingtons-disease-in-egypt-a-big-challenge-for-a-mysterious-disease/