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Nov. 8, 2017

TOPIC: Advocacy, Press Releases

More Than 200 Patient Groups Call On Congress to Reinstate the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act

Posted by Jennifer Huron
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Washington, D.C., November 8, 2017—Today, more than 200 nonpartisan patient groups sent a letter to Congress urging policymakers to not repeal the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act.

The proposed change to repeal the Orphan Drug Tax Credit would result in one-third fewer new treatments for rare diseases going forward[1].  Of the approximately 7,000 diseases considered rare in the U.S., only a few hundred have FDA-approved treatments[2].  The Orphan Drug Tax Credit gives hope to the nearly 95 percent of individuals with rare diseases who are still without a treatment. 

“We urge Congress to listen carefully to their constituents and the 30 million Americans with rare diseases,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonpartisan and nonprofit patient advocacy group representing all people with rare diseases.

“The Orphan Drug Tax Credit is one of the most important incentives for spurring the development of therapies for individuals with rare diseases, and its repeal is wholly unacceptable.  We implore the House of Representatives to reconsider.”

NORD said rare disease advocates have sent more than 2,000 letters to Congress in support of the Orphan Drug Tax Credit since the release of the Tax Cuts and Jobs Act on Nov. 2.

The full text of the letter to Congress and the signers can be viewed here.

[1] https://rarediseases.org/assets/files/white-papers/2015-06-17.nord-bio-ey-odtc.pdf

[2] http://cdn.rarediseases.org/wordpresscontent/wp-content/uploads/2014/11/NRD-1008-FactSheet_5.pdf

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