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Archives for: July 2nd, 2019

Registration Open for 2019 NORD Rare Summit

Written by Lisa Sencen on July 2, 2019

The time is now

  • To address affordability for patients,
  • To drive progress with a unified voice,
  • To understand the role of advancing technology in rare disease, and
  • To register for the 2019 NORD Rare Summit!

In 2019, we believe The Time is Now to prioritize action in order to develop stronger resources, build better outcomes… Read More

NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States

Written by Lisa Sencen on May 7, 2019

Washington, DC, May 7, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced its development of key drug pricing principles, created with the needs of the rare disease community in mind.

People living with rare… Read More

Updated Study Analyzes Use and Cost of Orphan Drugs

Written by Laura Mullen on October 18, 2018

Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the U.S. in 2017, according to a new study released today by the IQVIA Institute. The study… Read More

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

Written by Jennifer Huron on September 6, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More

NORD statement in response to American Patients First, the Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs

Written by Laura Mullen on May 15, 2018

The National Organization for Rare Disorders (NORD) today issued the following statement in response to American Patients First, the Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs:

Patients with rare diseases are frequently disproportionately affected by high drug prices.  Rare diseases tend to be… Read More