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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

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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

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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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August 29, 2018

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

2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Posted at August 8, 2018 10:48 am by Christina Jensen

Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of the speakers confirmed for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit, to be held October 15-16 in Washington, D.C…. Read More

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Copyright ©2018 NORD - National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.