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Archives for: October 30th, 2018

Free Webinar – Open Enrollment for Health Insurance: What You Need to Know

Written by Christina Jensen on October 30, 2018

With deadlines to select health plans for next year quickly approaching, the National Organization for Rare Disorders (NORD) is holding a webinar to aid rare disease patients and caregivers in navigating what may be a confusing process.

Join NORD’s policy team on Tuesday, October 30 at 3pm (Eastern Standard Time) for… Read More

Updated Study Analyzes Use and Cost of Orphan Drugs

Written by Laura Mullen on October 18, 2018

Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the U.S. in 2017, according to a new study released today by the IQVIA Institute. The study… Read More

Five Years of Patient Registry Success: NORD’s IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement  

Written by Laura Mullen on October 3, 2018

Washington, D.C., October 3, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today is celebrating five years of patient registry success with the announcement of a new multi-stakeholder model of engagement in collaboration with the Foundation for Prader-Willi… Read More

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