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Archives for: March 18th, 2019

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 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

The National Health Council and NORD Commend House Passage of FDA User Fee Reauthorization; Urge Senate to Follow Suit

Written by Christina Jensen on July 12, 2017

Washington, D.C., July 12, 2017 – The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) with overwhelming bipartisan approval.

Passing this bill is a crucial step in reauthorizing four user fee programs that ensure the Food… Read More