Patients & Members Archives - NORD (National Organization for Rare Disorders)

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

Tags: NORD Resources, Rare Disease Database, Rare Disease Patient & Caregiver Resource Center

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

Tags: Affordable Care Act, AIDS Institute, Arthritis Foundation, drug costs, out-of-pocket, patient advocates, pbm, State Policy, Tim Boyd

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

Tags: CHI, congenital hyperinsulinism, Congenital Hyperinsulinism International, HI, HI Global Registry, IAMRARE Registry Program, natural history study, patient registries, patient registry

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

Tags: CME, continuing medical education, Educational Initiatives, Mary Dunkle, Requests for Proposals, RFP

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

Read More

Tags: Cincinnati Children's Hospital Medical Center, Hemophilia Federation of America, Networking, NORD Rare Summit, NORD Summit, Poster Abstracts, Rare Diseases and Orphan Products Breakthrough Summit, Sanofi Genzyme

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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.