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Archives for: June 3rd, 2019

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

Written by Christina Jensen 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

NORD IAMRARE DHPS Patient Registry Launched

Written by Christina Jensen on April 26, 2019

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient 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… Read More

Orphan Drug Act Resolution Introduced in the House of Representatives

Written by Christina Jensen on March 18, 2019

Today, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

Now in its 36th year, the ODA has successfully encouraged the pharmaceutical industry to develop therapies for those with rare diseases. Prior to… Read More

NORD Welcomes Rachel Sher as Vice President of Regulatory and Government Affairs, Lesli Nordstrom as Director of Marketing and Communications

Written by Christina Jensen on January 17, 2019

Washington, DC, January 17, 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 two additions to its management team, effective immediately.

Rachel Sher joins NORD as Vice President of Regulatory and Government Affairs,… Read More