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Nov. 19, 2018

TOPIC: Advocacy, Featured News, Get Involved

Orphan Drug Act Resolution Introduced in Congress

Posted by Christina Jensen

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies indicated to treat a rare disease. Now, there are over 700 and counting!

There’s more work to be done, though. Approximately 95 percent of rare diseases are still without a single treatment approved by the Food and Drug Administration (FDA). Consequently, the ODA must remain strong!

Last year, Congress cut one of the incentives for companies to manufacture orphan drugs contained within the ODA in half. We cannot let that happen again! That’s why we are so excited that Senator Hatch and Representatives Lance and Butterfield have introduced this Resolution. We hope you will join us in asking all members of Congress to become a cosponsor of this Resolution and show their support of the ODA!

For more information on the Resolution, click here. Additionally, for more information on the ODA generally, check out NORD’s new one-pager here.


Support the Orphan Drug  Act Resolution!

Email your Senators and Representative and ask them to demonstrate their support for the ODA by cosponsoring H.Res.1154 and S.Res.690!