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Archives for: April 25th, 2018

NORD Issues Statement Regarding House Vote on Right to Try

Written by Lisa Sencen on March 22, 2018

Washington, D.C., March 22, 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 last night’s vote in the House of Representatives on the Right to Try Act:

“Last night, the House of Representatives… Read More

NORD Issues Statement Regarding House Vote on Right to Try

Written by Lisa Sencen on March 14, 2018

Washington, D.C., March 14, 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 in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act:

“Yesterday… Read More

83 Patient and Provider Organizations Remain Opposed to Right to Try Legislation

Written by Lisa Sencen on March 13, 2018
Yesterday evening, NORD joined 82 patient and provider organizations in sending a letter to the House of Representatives stating our opposition to the newest version of the Right to Try Act that was released on Saturday and is scheduled for a vote today.
While this version contains considerable improvements to patient… Read More

NORD to Collaborate with FDA on Pilot Patient Engagement Activity

Written by Lisa Sencen on February 28, 2018

Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions

Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a… Read More