Why It’s Important for the Rare Disease Community to Avoid Isolation

Why It’s Important for the Rare Disease Community to Avoid Isolation

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Why It’s Important for the Rare Disease Community to Avoid Isolation

By the time this column is published, nearly two weeks will have passed since the kick-off of the two-day New Zealand Patients, Carers & Healthcare Practitioners Amyloidosis Conference. I helped organize this important event, and believe it was especially worthwhile because sufferers are too often misdiagnosed and mistreated, eventually dying from what is deemed an “unknown” condition. Amyloidosis patients live in a world of hypotheticals and what-ifs. Their grueling experiences may be determined by a doctor’s…

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