Rare Disease Caucus Chairs Recognize Rare Disease Day

(Washington, D.C.) – Today, Reps. Joe Crowley (NY-14) and Leonard Lance (NJ-7), co-chairs of the Congressional Rare Disease Caucus, issued the following statement in recognition of Rare Disease Day: 

“Today, we join the millions of patients, their families, and the global health community in observing Rare Disease Day.

“For the 30 million Americans suffering from a rare disease, half of whom are children, medical advancements can’t come soon enough. Most rare diseases have no current treatment available, and many are not even studied by researchers.

“The Rare Disease Caucus is a way to not just build awareness of rare and neglected diseases, but also to focus on solutions that will help the millions of Americans struggling with a rare disease.

“There is much work ahead of us, but we believe that with the support of the entire rare disease community, we can help provide a spark of hope for the millions of patients and their families across America.”

The 30-plus member strong Rare Disease Caucus was established in 2010. The Caucus is focused on bringing Congressional attention to the nearly 7,000 known rare diseases, many of which currently have no approved therapies; ensuring sufficient funding for research and orphan product development; exploring ways to incentivize companies to create new drugs, biologics and humanitarian use devices; and providing an opportunity for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns. Rare and neglected diseases afflict nearly 30 million Americans, approximately half of whom are children.

Each year Rare Disease Day is observed on the last day of February. The goal is to draw attention to rare diseases as an important public health issue. Rare Disease Day was first observed in the United States in 2009 and since then more than 350 organizations, agencies, and companies signed on as Rare Disease Day Partners and governors in 47 states have issued proclamations.