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Public Statements

Making Rare Diseases a Thing of the Past

Floor Speech

Location: Washington, DC

Mr. MARINO. Mr. Speaker, I rise today to bring attention to an issue that affects millions of American citizens.

A rare disease is defined as a disease that affects fewer than 200,000 people. There are over 7,000 rare diseases that affect close to 30 million people.

My family knows the difficulties of dealing with a rare disease. My daughter, Chloe, has suffered from cystic fibrosis her entire life. CF is a life-threatening rare disease that causes mucus to build up and block major organs. Chloe is one of only 30,000 people affected by this disease in the United States.

As a rare disease, CF requires specialized care that can cost an individual hundreds of thousands of dollars over their lifetime. Even though there have been advancements in medicine, a CF sufferer may only survive into their thirties. This is much different than it was 50 years ago, where a child was lucky to live to the age of 10.

Today we observe CF and all other rare diseases to stress the importance of funding for rare disease research. Hopefully, we can make rare diseases a thing of the past.

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