5. Navigating the healthcare system
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5. Navigating the healthcare system
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Summary
When conditions are rare, even healthcare professionals fail to recognise them. This episode discusses some of the struggles that people living with rare blood disorders can experience when trying to get medical care.
Conditions mentioned in this episode: Paroxysmal Nocturnal Haemoglobinuria, Shwachman Diamond Syndrome
Further reading:
fanconihope.org sdsuk.org pnhuk.org theaat.org.uk super-rare.org
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