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Rare Disease Week


Rare Disease Week

July 14 - 22, 2021

Hosted virtually by Everylife Foundation

 

Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

ARM Foundation for Cell and Gene Medicine hosts a virtual exhibition table, with printable education materials about how cell and gene medicine, a growing field, is a new paradigm for healing rare genetic diseases.

This event is for patients, caregivers, and those who want to advocate for rare disease patients and their families and influence legislators in the US.

 
 
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July 23

BDSRA Virtual Annual Family Conference