Save Rare Treatments Task Force

Because Every Person With a Disease Deserves Treatment Options

Join our mission to protect bipartisan incentives that have made rare disease therapies a reality.

The ORPHAN Cures
Act – Now Law

Congress passed critical legislation to protect research into treatments for the millions of Americans currently suffering from rare diseases and rare cancers. The Task Force thanks bipartisan leaders in the House and Senate for their work to make ORPHAN Cures law.

Rare Disease at-a-Glance

Get a quick glimpse into the staggering numbers that define the world of rare diseases and orphan drugs.

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Rare diseases

There are approximately 10,000 different rare diseases.

< 0 %

have an approved treatment

Less than 10% of rare diseases have an FDA approved treatment available.

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Americans

Nearly 30 million people in the U.S. have a rare disease.

Watch: The Importance of Protecting Rare Disease Innovation

Learn about the ORPHAN Cures Act, a crucial bipartisan initiative designed to support innovation in rare disease treatments. Hear from experts and advocates Paul Kim, Arya Singh, and Lisa Schlager as they explain why this law is vital to encouraging drug innovation, expanding treatment options, and offering hope to rare disease patients.

Get Involved

Support the Save Rare Treatments Task Force and our advocacy efforts.

Resources

Read more about relevant research and insights related to policy developments impacting people with rare diseases.