Press Releases Archives - NORD (National Organization for Rare Disorders)

January 16, 2019

TOPIC: Advocacy, Events, Featured News, Patients & Members, Press Releases, Rare Disease Day, Sticky Posts for Homepage

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

Posted at January 1, 2019 10:45 am by Christina Jensen

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 people to literally and figuratively “show their stripes” in… Read More

Tags: #RareDiseaseDay, #ShowYourStripes, February 28, February 28th, NORD, Rare Disease Day, Rare Disease Day U.S. Sponsor, Show Your Stripes, Show Your Stripes Challenge, zebra

January 3, 2019

TOPIC: Featured News, Press Releases

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Posted at January 1, 2019 09:51 am by Laura Mullen

Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as a valuable resource for patients, families and caregivers in need of easy-to-understand information about rare diseases. The enhancements to the database and to the NORD website, which… Read More

Tags: Anthem, Anthem Foundation, GARD, Genetic and Rare Diseases Information Center, National Institutes of Health, National Organization for Rare Disorders, NIH, NORD, Rare Disease Database, Rare Disease Reports, Sika Dunyoh

December 3, 2018

TOPIC: Featured News, Patients & Members, Press Releases, Sticky Posts for Homepage

National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards

Posted at December 12, 2018 10:46 am by Laura Mullen

Danbury, CT, December 3, 2018 – The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will take place June 21 – 23 in Houston, Texas. In addition, the 2019 Rare Impact Awards… Read More

Tags: Living Rare, Living Rare Living Stronger, Living Stronger, National Organization for Rare Disorders, NORD

November 29, 2018

TOPIC: Medical, Press Releases, Uncategorized

NORD Publishes Report on Post-Transplant Lymphoproliferative Disease

Posted at November 11, 2018 09:16 am by Laura Mullen

Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Post-Transplant Lymphoproliferative Disease (PTLD) in its Rare Disease Database. This new resource is available free online… Read More

Tags: Atara, Epstein-Barr virus, Marsha Lanes, MD, National Organization for Rare Disorders, NORD, Post-Transplant Lymphoproliferative Disease, PTLD, Rare Disease Database, Thomas M. Haberman

October 18, 2018

TOPIC: Press Releases

Updated Study Analyzes Use and Cost of Orphan Drugs

Posted at October 10, 2018 09:33 am by Laura Mullen

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 was commissioned by the National Organization for Rare Disorders… Read More

Tags: 30 million, development, drug pricing, drug research, drug sales, FDA, Food and Drug Administration, IQVIA, IQVIA Institute, National Organization for Rare Disorders, non-orphan, non-orphan specialty drugs, NORD, Orphan Drug Act, orphan drugs, Orphan Drugs in the United States, orphan indications, Peter L. Saltonstall, RareInsights, research, study

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