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Mar. 18, 2019

TOPIC: Featured News, Advocacy, Get Involved

Orphan Drug Act Resolution Introduced in the House of Representatives

Posted by Lisa Sencen

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 the ODA’s enactment in 1983, only 34 therapies for rare diseases existed. Now, there are over 770 therapies on the market today to treat rare diseases. In addition, a majority of the novel drugs approved by the Food and Drug Administration (FDA) in 2018 were for rare diseases, the first time this has ever occurred. This incredible progress can be largely credited to the incentives within the ODA.

There’s more work to be done. Over 90 percent of rare diseases are still without a single treatment approved by the FDA. Consequently, the ODA must remain strong, and Congress must keep this critical law for our community in place.

“At NORD, we are very excited that Representatives Butterfield and Bilirakis have introduced this Resolution,” said Peter L. Saltonstall, President and CEO of NORD. “We are eager to work with them and their supportive colleagues to not only build support for this important resolution, but ensure the Orphan Drug Act itself remains strong.”

We are asking the rare disease patient community to ask all Representatives to become a cosponsor of this Resolution and show their support of the ODA! Please consider reaching out to your representative today.

For more information on the ODA, check out NORD’s RareInsights™ webpage here.

Support the Orphan Drug Act Resolution
Email your Representative and ask them to demonstrate their support for the ODA by cosponsoring H.Res. 242!