Date: 07/13/2020

Introducing the Disorder Channel 

A new streaming channel dedicated to the rare disease patient experience. With films and videos about rare diseases and quests for cures. 

They made a new film just in time for Rare Disease Day. A film about days with Rare Diseases. While rare families gathered at our film festival last fall, some of them told their stories on camera for us. Eleven families told us what was bad, what was good and how rare it is.

The short film covers the struggles with 8 rare diseases: Bosch-Boonstra-Schaaf optic atrophy syndrome, ichthyosis, EB, SYNGAP1, Menkes Disease, Dyskinesia, Okur Chung Syndrome, STXBP1

Directed by Daniel DeFabio 7 Minutes

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