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Tell Congress: Help Find Cures for Rare and Neglected Diseases

271
Supporters

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


Letter to
U.S. House of Representatives
U.S. Senate
I urge you to demonstrate your commitment to combating rare and neglected diseases by joining the Congressional Rare and Neglected Disease Caucus co-chaired by Congressmen Joseph Crowley (NY) and Fred Upton (MI).

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.

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. We can change this part of the world for our families!

I hope I can count on you to stand up for the individuals and families living with rare diseases by joining the Congressional Rare and Neglected Disease Caucus. To join the caucus, please contact Eli Kogan in Representative Crowley’s office at eli.kogan@mail.house.gov or via phone at x5-3965 or Mark Ratner in Representative Upton’s office via email at mark.ratner@mail.house.gov or via phone at x5-3761.