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This Missed Opportunity of a Bill

Bill H.R. 4228 also known as the Rare disease Advancement, Research and Education

(RARE) Act was proposed by André Carson, a democratic representative for Indiana’s seventh congressional district on September 6, 2019. The Rare Act intended to focus on awareness, data, research, and policies regarding identifying and finding cures for rare diseases.

Awareness: Through the bill, health professionals would increase their awareness of rare

diseases and conditions through the Agency for Healthcare Research and Quality (AHRQ).

Data: Support the Centers of Disease Control and Prevention (CDC) in creating a rare disease surveillance system to help track the epidemiology of up to four rare diseases while also expanding the infrastructure of the CDC.

Research: Increase research by expanding the Rare Diseases Clinical Research Network

(RDCRN) at the National Institute of Health (NIH). Additionally, expand the capabilities of the

NIH and CDC by improving treatments, research, and diagnostics through new and existing


Policies: The bill would require an update to the 2010 report on rare diseases made by the

National Academies of Sciences, Engineering, and Medicine.

Despite the good intentions of this bill, it was short lived in the 116th congress. With only

76 cosponsors and advocacy from 139 patient advocacy groups, this bill did not receive enough votes from congress to be made into a bill. 1 in 10 Americans live with one or more of the 7000 known rare diseases, yet even with such a high probability, passing a bill that would help this marginalized demographic is not politically expedient.

This was a missed opportunity for congress to help increase the amount of knowledge we

have on rare diseases while also improving treatment and care. It is unclear when another bill targeted for rare diseases will be introduced, but it is clear that we cannot lose another


How can constituents be more involved and vocal about the kind of legislation they are

interested in being passed? Or how can this bill be improved for the future if there is another

chance for reintroduction? Let us know what you think at!

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