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Representatives Carson and Hudson Introduce Resolution to Support Rare Disease Day

Feb 10, 2020
Press Release

Washington, DC – Congressman André Carson (D-IN) and Congressman Richard Hudson (R-NC) have introduced a bipartisan resolution (H.Res 840) to support the designation of the last day of February as “Rare Disease Day” to honor the nearly 1 in 10 Americans living with rare diseases.

“I am honored to join my colleague, Rep. Hudson, in recognizing the millions of Americans bravely battling rare diseases and celebrating their courage,” Rep. Carson said. “It’s also fitting that we are introducing this resolution during Black History Month, since African Americans are particularly vulnerable to rare diseases like Sickle Cell Anemia and Sarcoidosis. I hope our resolution shines a light on this struggle and strengthens the search for treatment and cures for African Americans, and all Americans, living with rare diseases.”

“Rare diseases impact millions of families each year who are faced with difficulties in obtaining diagnoses and treatment,” said Rep. Hudson. “I’m proud to co-lead this resolution to raise awareness for rare diseases and the need to develop more research and cures. As a member of the Energy and Commerce Committee’s Subcommittee on Health, I’ll continue to work on bipartisan solutions to improve health care and encourage medical innovation.”

Rare diseases are defined as conditions that affect fewer than 200,000 people. Many of these conditions are serious and life threatening, and lack effective treatments. To make matters worse, more than half of those battling rare diseases  are children.

In 2019, Rare Disease Day was officially observed by more than 100 countries. To mark this occasion, people living with rare diseases and their loved ones share their stories  to educate researchers, health professionals, governments, and community organizations about how rare diseases affect them.

Last year, Reps. Carson and Hudson introduced Rare diseases Advancement, Research, and Education (RARE) Act (H.R. 4228), which expands the ability of public health agencies to study rare diseases by improving treatment, research, and diagnostics of rare diseases through new and existing programs.

The full list of original cosponsors is below:

Rep. Cynthia Axne

Rep. Joyce Beatty

Rep. Gus Bilirakis

Rep. Susan Brooks

Rep. G. K. Butterfield

Rep. Peter DeFazio

Rep. Brian Fitzpatrick

Rep. Barbara Lee

Rep. Tom Malinowski

Rep. Doris Matsui

Rep. Lucille Roybal-Allard

Rep. Bobby Rush

Rep. Peter Visclosky