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Rare Disease Week

Floor Speech

Date: Feb. 25, 2019
Location: Washington, DC
Issues: Health and Health Care Government Budget and Spending

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Mr. JOHNSON of Georgia. Mr. Speaker, I rise today in recognition of Rare Disease Week.

Around 350 million people, worldwide, suffer from a rare disease. That is more than the number of people who live in the United States, alone, and it is particularly alarming when we consider how few resources are available to those battling a rare disease.

In fact, of the 7,000 rare diseases in existence, half of them don't have a designated foundation or research support group, and nearly 90 percent lack an FDA-approved treatment.

As a member of the Rare Disease Congressional Caucus, I urge my colleagues to support measures that would increase funding for research and put our resources into the development and accessibility of lifesaving treatments. Treatments should not be as rare as the diseases they heal.

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