Rare Disease News

NORD Receives Grant from Anthem Foundation for Expansion of Rare Disease Database®

Published September 25, 2018 by NORD

Categorized in -

Washington, D.C., September 25, 2018 – The National Organization for Rare Disorders (NORD) announced today it is enhancing its Rare Disease Database which serves as a valuable source of information …

Continue reading “NORD Receives Grant from Anthem Foundation for Expansion of Rare Disease Database®”

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

Published September 11, 2018 by NORD

Categorized in -

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 …

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

2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Published August 29, 2018 by NORD

Categorized in -

Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of …

Continue reading “2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation”

Healthline and NORD Announce Recipients of 2018 Stronger Scholarships

Published August 15, 2018 by NORD

Categorized in -

Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the …

Continue reading “Healthline and NORD Announce Recipients of 2018 Stronger Scholarships”

NORD’s RareEDU® Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Published July 19, 2018 by NORD

Categorized in -

Watch the latest release from NORD’s RareEDU™ on gene therapy.

NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Published May 29, 2018 by NORD

Categorized in -

Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world …

Continue reading “NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act”

New Research Funding Opportunities Available from NORD

Published May 24, 2018 by NORD

Categorized in -

All U.S. and international researchers are encouraged to apply by the initial application deadline of July 16, 2018

Neurology Reviews® and NORD Publish the 2018 Rare Neurological Disease Special Report

Published March 27, 2018 by NORD

Categorized in -

Parsippany – March 26, 2018 – The 2018 Rare Neurological Disease Special Report has been published by Neurology Reviews in collaboration with NORD, the National Organization for Rare Disorders, the leading independent nonprofit representing …

Continue reading “Neurology Reviews® and NORD Publish the 2018 Rare Neurological Disease Special Report”

NORD Rare Action Network® 2018 State Report Card

Published March 20, 2018 by NORD

Categorized in -

The 2018 report has grown to cover several emerging issues. Download your copy today.

NORD to Collaborate with FDA on Pilot Patient Engagement Activity

Published February 28, 2018 by NORD

Categorized in -

Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the …

Continue reading “NORD to Collaborate with FDA on Pilot Patient Engagement Activity”