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<p>Sturge-Weber Syndrome (SWS), is a rare neuro-oculo-cutaneous disorder that presents unique diagnostic and management challenges, particularly in resource-limited settings. This editorial reflects on a recent case of an undiagnosed SWS in an Ethiopian refugee patient in Sudan, highlighting systemic barriers to healthcare access during a time of war and the importance of clinical vigilance. We advocate for local and global initiatives to further enhance diagnostic capabilities, develop integrated care systems in recognition and management of such a rare and complex condition.</p>

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Systemic barriers to rare disease management in conflict zones: insights from a refugee with sturge-weber syndrome in Sudan

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年4月2日

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  • Awab H. Saad,
  • Ismat B. Babiker,
  • Sulieman H. Saad

摘要

Sturge-Weber Syndrome (SWS), is a rare neuro-oculo-cutaneous disorder that presents unique diagnostic and management challenges, particularly in resource-limited settings. This editorial reflects on a recent case of an undiagnosed SWS in an Ethiopian refugee patient in Sudan, highlighting systemic barriers to healthcare access during a time of war and the importance of clinical vigilance. We advocate for local and global initiatives to further enhance diagnostic capabilities, develop integrated care systems in recognition and management of such a rare and complex condition.