News from national organization for rare disorders (nord) A wide array of domestic and global news stories; news topics include politics/government, business, technology, religion, sports/entertainment, science/nature, and health/lifestyle.

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Apr 30, 2019, 13:42 ET NORD Research Grant Program Celebrates 30th Anniversary, Funding Opportunities Announced

The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living...


Mar 12, 2019, 11:15 ET National Organization for Rare Disorders (NORD)Ⓡ Announces 2019 Rare Impact Award Honorees

The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for...


Jan 16, 2019, 13:30 ET NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living...


Dec 18, 2018, 16:10 ET New Study Finds Orphan Drug Exclusivity Working As Intended, On-Market Orphan Drug Prices Rise Slower than Common Drugs

A new report commissioned by the National Organization for Rare Disorders (NORD) and published today by the IQVIA Institute, demonstrates that the...


Dec 03, 2018, 14:33 ET National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum

The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, ...


Oct 18, 2018, 09:37 ET Updated Study Analyzes Use and Cost of Orphan Drugs

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...


Oct 03, 2018, 10:30 ET Five Years of Patient Registry Success: NORD's IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare...


Aug 29, 2018, 11:00 ET 2018 NORD Rare Summit to Feature Distinguished Speakers Discussing 'A New Era of Patient-Focused Innovation'

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare...


May 30, 2018, 03:00 ET NORD Launches RareInsights - New Initiative to Support Data-Driven Advocacy, and Presents "5 Myths About Orphan Drugs and the Orphan Drug Act"

The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and...


May 24, 2018, 03:00 ET New Research Funding Opportunities Available from NORD

The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and...


Mar 21, 2018, 11:30 ET National Organization for Rare Disorders (NORD) Announces Honorees for 2018 Rare Impact Awards

The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th...


Mar 20, 2018, 10:00 ET New Report Shows States Fall Short on Policies to Help Reduce Burden of Rare Diseases Affecting 1 in 10 Americans

A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according...


Feb 28, 2018, 08:55 ET NORD to Collaborate with FDA on Pilot Patient Engagement Activity

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare...


Jan 16, 2018, 01:00 ET The National Organization for Rare Disorders (NORD) Launches 7,000 Mile Rare Movement Challenging Americans To Chart 7,000 Miles During Month Of February

The National Organization for Rare Disorders (NORD)®, the leading nonprofit organization dedicated to helping the 30 million Americans with rare...


Jan 04, 2018, 10:16 ET NORD and the Orphan Drug Act Celebrate 35th Anniversaries

This year marks the 35th anniversaries of both the Orphan Drug Act, a law that provided incentives for the development of drugs for patients with...


Dec 20, 2017, 09:25 ET NORD Awards Five New Grants for Rare Disease Research

The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and...


Nov 30, 2017, 09:19 ET NORD Publishes Information for Physicians and Patients on Three Rare Diseases

The National Organization for Rare Disorders (NORD) has published new physician guides to promote diagnosis and treatment for patients with three...


Nov 28, 2017, 10:49 ET Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in...


Nov 14, 2017, 13:31 ET 36 Patient Organizations Stand Together in Opposition to the Senate's Proposed Weakening of the Orphan Drug Tax Credit

On behalf of millions of Americans with rare diseases, a coalition of 36 patient organizations united to oppose the Senate's proposed weakening of...


Nov 08, 2017, 14:22 ET More Than 200 Patient Groups Call On Congress to Reinstate the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act

Today, more than 200 nonpartisan patient groups sent a letter to Congress urging policymakers to not repeal the Orphan Drug Tax Credit in the Tax...


Oct 26, 2017, 08:25 ET New documentary shares the experience of 11-year-old boy living with rare and life-threatening allergy to sunlight

Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new...


Oct 17, 2017, 11:11 ET New Study Examines Use and Cost of Orphan Drugs

Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, according to a study issued today by the QuintilesIMS Institute. The...


Oct 13, 2017, 13:00 ET Nominations Now Being Accepted for NORD® 2018 Rare Impact Awards Recognizing Those Who Are Leading Efforts to Help People with Rare Diseases

Do you know a person or company that is making a difference in the fight against rare diseases? Submit a nomination for the 2018 Rare Impact Awards...


Jul 20, 2017, 13:04 ET El Dorado, KS will turn night into day for 10-year-old boy living with rare and life-threatening allergy to sunlight

The town of El Dorado, Kansas, in collaboration with the National Organization for Rare Disorders (NORD), the leading independent nonprofit...


Jul 20, 2017, 10:04 ET NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare...