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Blog

Mar 31
0

NORD Membership

By NGLY1.org | Partners, Public Policy | No Comments
NGLY1.org became a member of the National Organization for Rare Disorders (NORD) in March 2016. NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations...
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Mar 18
0

CDG Family Conference organized by NGLY1.org and CDG CARE

By NGLY1.org | CDG, Events, NGLY1 Families, NGLY1.org, Resources | No Comments
The 2016 CDG Family Conference was organized in collaboration with CDG CARE and the Sanford Burnham Prebys (SBP) Medical Discovery Institute. The conference was held February 27-29th in Del Mar, CA....
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