Rare Disease Report

Advice to Rare Disease Parents - Speak Out

APRIL 14, 2017
James Raffone, JAR of Hope

James Raffone, founder of JAR of Hope provides some advice to those parents debating whether to 'go public' with their rare disease struggles. According to Mr Raffone, parents should not be afraid to speak out. Often the parent is the only voice for a disease and if they do not speak, nobody will know about the disease.

JAR of Hope is a non-profit advocacy groups focused on finding treatments for Duchenne muscular dystrophy. It was founded by James Raffone following the diagnosis of his son with Duchenne.

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