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Petitioning U.S. House of Representatives and 1 other

Tell Congress: Help Find Cures for Rare and Neglected Diseases


Today, an estimated 7,000 rare diseases afflict nearly 30 million Americans, many who are children. Treatments exist for only a fraction of these devastating, life-threatening disorders, leaving millions with significant unmet medical needs and little hope.

Despite this fact, research opportunities remain challenging, and approved therapies are scarce. Rare and neglected diseases represent a large medical challenge in general, but combined with the bureaucratic hurdles faced by companies who attempt to create new drugs and the lack of financial incentives to treat or cure rare diseases, families and patients must face these diseases without necessary support or treatment.

In order to ensure that Congress does all it can to fund critical research to identifying cures for these diseases—we must urge our Members of Congress to join the newly-formed Congressional Rare and Neglected Disease Caucus.

The Rare and Neglected Disease Caucus will provide a valuable forum for policymakers, families, and others to exchange ideas for solutions to the many issues that confront the rare disease community.  By working together we can raise awareness, advance policy goals, and remove the barriers to successful treatments and cures for rare diseases. 

By urging our members of Congress to become part of the Rare and Neglected Disease Caucus, we can get closer to eliminating these devastating, life-threatening disorders that impact so many families throughout our country.

Photo credit: Catherine Calhoun

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