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October 31, 2018

TOPIC: Featured News, Patients & Members

NORD Creates Rare Disease Patient & Caregiver Resource Center

Posted at October 10, 2018 09:41 am by Christina Jensen

One of NORD most popular resources is the Rare Disease Database. In any given month, 80% of the traffic to the website goes to one of NORD’s Rare Disease Reports. Many years ago, before the Internet, these online reports were printed and mailed to patients and caregivers. Now, in 2018, NORD offers webinars, videos, fact sheets and… 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.


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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 8, 2018

TOPIC: Medical, Patients & Members, Sticky Posts for Homepage

NORD Seeks Proposals for CME Partnership

Posted at October 10, 2018 10:09 am by Christina Jensen

The National Organization for Rare Disorders is seeking a partner to collaborate on the development of educational resources for medical professionals. NORD has published a Request for Proposals inviting accredited CME providers to respond with proposals by November 16.


Celebrating its 35th anniversary… Read More

September 12, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Research

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Posted at September 9, 2018 04:35 pm by Christina Jensen
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