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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

August 1, 2018

TOPIC: Advocacy, Get Involved, Patient Stories

NORD Invites Video Submissions on Advocacy Experience

Posted at August 8, 2018 10:05 am by Christina Jensen

Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking the organization’s 35 years of voicing the needs of… Read More

July 17, 2018

TOPIC: Advocacy

NORD Responds to the Administration’s “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”

Posted at July 7, 2018 05:11 pm by Christina Jensen
Washington, D.C., July 17, 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 after responding to the Administration’s “HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”:
“Yesterday, NORD officially responded to the Trump Administration’s call for commentson their ‘Blueprint… Read More

July 11, 2018

TOPIC: Advocacy, Events, Featured News, Industry, Patients & Members, Research

FDA Commissioner Dr. Scott Gottlieb Confirmed as 2018 NORD Rare Summit Keynote Speaker

Posted at July 7, 2018 09:21 am by Christina Jensen

1200px-Scott_Gottlieb_official_portraitDr. Scott Gottlieb was sworn in as the 23rd Commissioner of Food and Drug Administration in 2017, and provided a keynote speech at the NORD Rare Summit shortly thereafter. 2018 marks his second year at the Summit, and we look forward to Dr. Gottlieb’s update for the rare disease community.

In addition… Read More

June 27, 2018

TOPIC: Advocacy

NORD Issues Statement on Recent CMS Actions Pertaining to Patient Access Within Medicaid Formularies

Posted at June 6, 2018 04:46 pm by Christina Jensen
Washington, D.C., June 27, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding this week’s actions by the Centers for Medicare and Medicaid Services (CMS) to protect patient access to medication within Medicaid formularies:
“NORD lauds the Centers for Medicare and… Read More