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

## TL;DR

This paper discusses the challenges of managing a rare disease in a conflict zone, using the case of an undiagnosed refugee in Sudan.

## Contribution

The paper highlights systemic barriers to healthcare access for rare diseases in conflict zones and advocates for improved diagnostic and care systems.

## Key findings

- An Ethiopian refugee in Sudan had undiagnosed Sturge-Weber Syndrome due to systemic healthcare barriers.
- War and resource limitations hinder the diagnosis and management of rare diseases like SWS.
- Clinical vigilance and global initiatives are needed to improve care for rare diseases in conflict zones.

## Abstract

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.