Voice of the Patient Archives - NORD (National Organization for Rare Disorders)

NORD and Patient Advocacy Groups Host an EL-PFDD Meeting on Krabbe Disease

Written by Debbie Drell on November 2, 2020

One of the most important gatherings of the Krabbe disease community occurred in collaboration with the US Food and Drug Administration (FDA) on October 29, and it was 100% virtual with live, interactive components. FDA regulators, academic researchers and industry drug developers… Read More

NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

Written by Laura Mullen on January 23, 2020

Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, 2019 with patients and families sharing their experiences directly with the US Food and Drug Administration (FDA) and other key… Read More

Archives for: November 2nd, 2020

NORD and Patient Advocacy Groups Host an EL-PFDD Meeting on Krabbe Disease

Written by Debbie Drell on November 2, 2020

NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

Written by Laura Mullen on January 23, 2020

Alone we are rare. Together we are strong.®