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Archives for: March 22nd, 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

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

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