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Archives for: January 17th, 2019

NORD Welcomes Rachel Sher as Vice President of Regulatory and Government Affairs, Lesli Nordstrom as Director of Marketing and Communications

Written by Christina Jensen on January 17, 2019

Washington, DC, January 17, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced two additions to its management team, effective immediately.

Rachel Sher joins NORD as Vice President of Regulatory and Government Affairs,… Read More

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Written by Christina Jensen on January 16, 2019

Washington, DC, January 16, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for… Read More

NORD IAMRARE KAT6A Patient Registry Launched

Written by Christina Jensen on January 9, 2019

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, KAT6A, officially launched their patient registry, KAT6A Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We… Read More

NORD Issues Statement on FDA’s Impending Expanded Access Call Center

Written by Christina Jensen on December 20, 2018

Washington, D.C., December 20, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on FDA’s impending expanded access call center:

“Late last week, the Food and Drug Administration (FDA) announced it will soon… Read More