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July 19, 2018

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

NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Posted at July 7, 2018 10:17 am by Lisa Sencen

Washington, D.C., July 19, 2018—The National Organization for Rare Disorders (NORD) today launched Gene Therapy: Your Questions Answered, a new video from its RareEDU educational program addressing some of the most commonly asked questions from patients and caregivers on the topic.  It is available for viewing hereRead More

June 4, 2018

TOPIC: Advocacy, Featured News, Medical

NORD Issues Statement on Increasing Use of CoPay Accumulator Programs in Health Plans

Posted at June 6, 2018 09:34 am by Lisa Sencen
Washington, D.C., June, 4, 2018 —The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the increasing use of copay accumulator programs in health plans:
“Recently, a number of health plans have started implementing, what are broadly known as, ‘copay accumulator programs.’ These programs prevent… Read More

May 21, 2018

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

Save the Date for NORD’s 2018 Rare Summit

Posted at May 5, 2018 03:36 pm by Lisa Sencen

We are looking forward to bringing all stakeholders in rare diseases together once again for our annual Rare Diseases and Orphan Products Breakthrough Summit. We hope to see you there! Please mark the details below in your calendars and keep an eye out for a registration announcement in early June.


Rare Diseases &… Read More

April 25, 2018

TOPIC: Events, Featured News, Get Involved, Medical, Patient Stories, Patients & Members

Robert Campbell, Jr., M.D.: 2018 Lifetime Achievement Award Honoree

Posted at April 4, 2018 01:24 pm by Lisa Sencen

Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia (CHOP). He is best… Read More

April 25, 2018

TOPIC: Featured News, Get Involved, Industry, Medical, Patient Stories

Richard Pazdur, M.D.: 2018 Public Health Leadership Award Honoree

Posted at April 4, 2018 01:07 pm by Lisa Sencen

Richard Pazdur, M.D. is the Director of the Food and Drug Administration’s Oncology Center of Excellence (OCE), which leverages the combined skills of the FDA’s regulatory scientists and reviewers with expertise in drugs, biologics and devices to expedite the development of novel cancer products. In his role as director of the OCE, Dr. Pazdur is responsible for leading the… Read More