Rep. Carson Introduces Bipartisan Legislation to Help Fight Rare Diseases

Statement

Today, Congressman André Carson (D-IN) and Rep. Richard Hudson (R-NC) introduced bipartisan legislation that provides better research and resources for the study and treatment of rare diseases. The Rare diseases Advancement, Research, and Education (RARE) Act (H.R 4228) will expand the ability of the National Institutes of Health (NIH) and Centers for Diseases Control and Prevention (CDC) to study rare diseases by improving treatment, research, and diagnostics of rare diseases through new and existing programs. This legislation received the endorsement of 139 patient advocacy groups.

"I am incredibly honored to introduce this much-needed piece of legislation that will help provide hope and relief to the nearly 1 in 10 Americans living with a rare disease," Congressman Carson said. "For these individuals and their loved ones, the conditions they have present unique challenges, including difficulty obtaining an accurate diagnosis and finding doctors with the expertise to treat their condition. Our legislation will help put an end to these ongoing challenges, and ultimately pave the way to many cures.

"Every year, far too many families experience pain when a loved one comes down with a mysterious and rare disease," Rep. Hudson said. "These rare diseases have little data or treatment options available, and specialists are often few and far between. The RARE Act would bolster resources and create new programs to help identify rare diseases and develop new cures. I look forward to working with Rep. Carson to get these needed resources to patients and their families."

The RARE Act would improve research by expanding the Rare Diseases Clinical Research Network (RDCRN), an existing program at the NIH that has already proven successful. It would also create a rare disease surveillance system at the CDC, as well as increase health professionals' awareness of these diseases through added engagement from Agency for Healthcare Research and Quality (AHRQ).

And it would require the National Academics of Sciences, Engineering and Medicine to update their 2010 report on rare diseases "Rare Diseases and Orphan Products: Accelerating Research and Development" in order to further evaluate rare disease efforts and make further recommendations to policymakers.

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