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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

October 11, 2018

TOPIC: Advocacy, Featured News, Patients & Members, Press Releases

Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs

Posted at October 10, 2018 09:28 am by Christina Jensen
NORD’s Director of State Policy Tim Boyd participated in a press briefing on copay accumulators yesterday, which was followed by the issuance of the following press release that includes links to further information on this important topic.

PATIENT ADVOCATES WARN AGAINST NEW INSURANCE & PBM POLICY THAT INCREASES PATIENT OUT-OF-POCKET DRUG COSTS

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October 9, 2018

TOPIC: Featured News, Patients & Members, Press Releases, Research

NORD IAMRARE HI Global Registry Launched

Posted at October 10, 2018 10:51 am by Christina Jensen

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased… Read More

October 3, 2018

TOPIC: Featured News, Press Releases, Research, Sticky Posts for Homepage

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

Posted at October 10, 2018 09:21 am by Laura Mullen

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 Research and Zafgen, Inc.

 

In the rare disease space, with… Read More

September 25, 2018

TOPIC: Featured News, Press Releases

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

Posted at September 9, 2018 09:44 am by Laura Mullen

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 for patients, families and caregivers in need of easy to understand language on rare diseases that are frequently misdiagnosed or undiagnosed. The enhancements to the database are… Read More