The HPS Network has joined with the National Organization of Rare Disorders (NORD) and more than 200 rare disease organizations to oppose repeal of the Orphan Drug Tax Credit within the proposed Tax Cuts and Jobs Act. This tax credit is one of the only a few incentives to encourage pharmaceutical companies to develop treatments for rare disorders. Currently, 95 percent of people affected by a rare disorder have no FDA approved treatment, including those with Hermansky-Pudlak Syndrome. Rare disorders affect 1 in 10 Americans.

The credit allows pharmaceutical companies to claim a tax credit of 50 percent of the qualified costs of clinical research and drug testing of orphan drugs. It was first implemented in 1983. Since then, 3,500 drugs potential treatments have been eligible for the credit, and 500 orphan therapies have made it all the way to FDA approval. Yet, there is still so much work to do!

It isn’t too early to contact your member of Congress. To find out how, go to: https://rarediseases.org/advocate/policy-priorities/contact-representatives/

 

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