Press Releases Archives - NORD (National Organization for Rare Disorders)

August 3, 2017

TOPIC: Advocacy, Events, Featured News, Press Releases

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

Posted at August 8, 2017 01:10 am by Lisa Phelps

Washington, D.C., August 3, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of the Food and Drug Administration Reauthorization Act of 2017:

“Today the Senate joined the House in overwhelmingly passing the Food and Drug Administration Reauthorization Act… Read More

Tags: FDA, FDA Reauthorization Act, FDARA, Patient Focused Drug Development Initiative, user fees

June 22, 2017

TOPIC: Advocacy, Featured News, Press Releases

NORD Issues Statement on the Better Care Reconciliation Act of 2017

Posted at June 6, 2017 10:47 am by Christina Jensen

Washington, D.C., June 22, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the release of the Senate Leadership’s Better Care Reconciliation Act of 2017 discussion draft:

“Senate Leadership today released a discussion draft of the Better Care Reconciliation Act of 2017 (BCRA), an amended version of… Read More

Tags: ACA, Affordable Care Act, AHCA, American Health Care Act, BCRA, Better Care Reconciliation Act of 2017, healthcare reform, protect your healthcare coverage

June 13, 2017

TOPIC: Medical, Press Releases, Research, Sticky Posts for Clinicians and Researchers

NORD Publishes New Rare Disease Report on CARD9 Deficiency

Posted at June 6, 2017 09:28 am by Christina Jensen

Washington, D.C., June 13, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on CARD9 Deficiency. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More

Tags: CARD9 Deficiency, Dr. Donald C. Vinh, Marsha Lanes, McGill University Health Centre Research Institute, Melanie Langelier RN, Rare Disease Reports

May 31, 2017

TOPIC: Featured News, Press Releases

NORD Releases Statement on Orphan Drug Assessment & Pricing Summit

Posted at May 5, 2017 03:10 pm by Amanda DeBellis

Washington, D.C., May 31, 2017—NORD released the following statement in advance of today’s “Orphan Drug Assessment and Pricing Summit” held by the Institute for Clinical and Economic Review (ICER):

“We are pleased to participate in ICER’s ‘Orphan Drug Assessment and Pricing Summit’, and look forward to providing the rare disease patient’s viewpoint on the importance of orphan… Read More

Tags: cost of orphan drugs, ICER, orphan drugs, press release

May 2, 2017

TOPIC: Advocacy, Press Releases

Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients

Posted at May 5, 2017 05:30 pm by Lisa Phelps

WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of accessing unapproved therapies outside of a clinical trial, also known as compassionate use or expanded access. The patient advocacy organizations include: Alliance for Aging Research, American Cancer Society Cancer Action Network,… Read More

Tags: Alliance for a Stronger FDA, Alliance for Aging Research, American Cancer Society Cancer Action Network, Compassionate Use, Expanded Access, FDA, Friends of Cancer Research, Leukemia and Lymphoma Society, Parent Project Muscular Dystrophy, St. Baldrick’s Foundation

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