Bad Days, Good Days, Rare Days.

Eleven families describe what it’s like to struggle daily with eight different rare diseases. Including Epidermolysis Bullosa (EB),Syngap1, Menkes Disease, Ichthyosis, Bosch-Boonstra-Schaaf optic atrophy syndrome, Dyskinesia and Okur Chung.

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Eleven families describe what it’s like to struggle daily with eight different rare diseases.

Including Epidermolysis Bullosa (EB),Syngap1, Menkes Disease, Ichthyosis, Bosch-Boonstra-Schaaf optic atrophy syndrome, Dyskinesia and Okur Chung.

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