Featured News 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 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

Tags: Director of the Center for Drug Evaluation and Research at the Food and Drug Administration, FDA, Foundation for Prader-Willi Research, hyperphagia, IAMRARE, Inc., Janet Woodcock, National Organization for Rare Disorders, natural history, natural history study, NORD, PATH for PWS, Peter L. Saltonstall, Prader-Willi, registry model, registry program, sub-study, Zafgen

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

Tags: Anthem, Anthem Foundation, grant, Harvard Medical School, Inc., Johns Hopkins Medicine, mayo-clinic, MD, National Organization for Rare Disorders, NORD, Peter L. Saltonstall, Rare Disease Database, Seattle Children's Hospital, Stephen Friedhoff, www.rarediseases.org

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October 31, 2018

NORD Creates Rare Disease Patient & Caregiver Resource Center

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

October 11, 2018

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

October 9, 2018

NORD IAMRARE HI Global Registry Launched

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

October 3, 2018

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

September 25, 2018

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

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

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Alone we are rare. Together we are strong.®