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Archives for: September 19th, 2019

NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire

Written by Laura Mullen on September 11, 2018

Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire.

NORD’s IAMRARETM Registry Program provides a web-based tool… Read More

Debra Miller: 2016 Rare Impact Awards Honoree

Written by Lisa Sencen on May 11, 2016

Debra Miller co-founded CureDuchenne in 2003 with her husband, Paul, after their only son was diagnosed with Duchenne Muscular Dystrophy. With a background in sales and marketing, she leads CureDuchenne and has funded seven research projects that have advanced to human clinical trials, three of which are the… Read More