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Public Statements

Recognizing Rare Disease Day

Floor Speech

By:
Date:
Location: Washington, DC

Mr. LYNCH. Mr. Speaker, today, February 28, 2013, marks the sixth annual International Rare Disease Day, a day to raise awareness of the nearly 7,000 rare diseases affecting 30 million Americans, or about one in ten people. Here in the United States, any disease affecting 200,000 people or fewer is considered rare.

Rare Disease Day is also an opportunity to celebrate the life-saving advances in science and research that continue to transform the diagnosis, treatment, and standard of care for many orphan diseases, thanks in no small part to the advocacy efforts of the medical community, patients and their families, and rare disease organizations.

In my congressional district, I have met with a number of constituents and their families whose lives have been impacted by rare diseases, cystic fibrosis among them.

Cystic fibrosis is a genetic disease affecting approximately 30,000 children and adults in the United States and is characterized by a reduction in the flow of salt and water across cell membranes, which leads to the buildup of thick, sticky mucus in the lungs. In 1955, with limited therapies available, children with cystic fibrosis were not expected to live long enough to attend elementary school. Today, due to significant improvements in medical treatment and care, people with the disease are living longer, healthier lives. The median predicted age of survival now stands at 38 years.

Today, I have never been more hopeful of the promise science holds for all patients affected by rare diseases; however, there remains much work to be done. On this sixth annual International Rare Disease Day, I join with patients and their families in urging my colleagues to think about what more Congress can do to help bring hope to those suffering from rare diseases.


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