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Archives for: March 14th, 2018

NORD Issues Statement Regarding House Vote on Right to Try

Written by Christina Jensen 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 Christina Jensen 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 Christina Jensen 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

FDA Announces First Gene Therapy in U.S.

Written by Mary Dunkle on August 31, 2017

In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood… Read More