Wednesday, March 02, 2011

Urge your Congressional rep. to join the Rare Disease Caucus

This press release pretty much says it all.

Press Release



For Immediate Release


February 28, 2011


Contact: (202) 225-3965


Reps. Lance and Crowley Announce Rare Disease Caucus Lawmakers Create Bipartisan Awareness and Education Effort On National Rare Disease Day






Washington, D.C. — U.S. Reps. Leonard Lance (NJ-7) and Joe Crowley (NY-7) today announced the reestablishment of the Rare Disease Congressional Caucus for the 112th Congress. The lawmakers, who will serve as co-chairs of the Caucus, made their announcement at a Capitol Hill press conference with rare disease advocates on National Rare Disease Day 2011.






The goals of the Rare Disease Caucus are to bring Congressional attention to the nearly 7,000 known rare diseases that currently have no approved therapies, ensure sufficient funding for research and orphan product development, explore ways to incentivize companies to create new drugs, biologics and humanitarian use devices, and provide 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.






“The Rare Disease Congressional Caucus will provide an important forum in Washington for the exchange of ideas and information related to rare diseases,” Lance said. “Congressman Joe Crowley and I are committed to working together in a bipartisan capacity with like-minded members, policy advocates and families across the nation to increase awareness and education of rare diseases.”






“Patients and families affected by a rare disease have been without a light at the end of the tunnel for far too long,” said Rep. Crowley. “With one out of every 10 Americans suffering from a rare disease, it is absolutely critical that we do all we can to identify research opportunities, therapy options, and treatment. Together with Congressman Lance, I hope the Caucus will make strides in building awareness of rare diseases and identifying solutions to help the many Americans who are suffering.”






Joining the U.S. Representatives at the Caucus kick-off were rare diseases advocates including representatives from the National Organization for Rare Disorders (NORD) and New Jersey’s John Crowley, Chairman and CEO of Amicus Therapeutics, and the inspiration for the 2010 motion picture, “Extraordinary Measures.” The movie, which stars Harrison Ford and Brendan Fraser, chronicles John Crowley's family’s decade-long search to find a cure for a rare illness afflicting two of their children.






"Rare Disease Day enables us to focus attention on the needs or the 30 million Americans with rare diseases," said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the umbrella group over organizations that represent patients with rare diseases. "We are grateful to Congressmen Leonard Lance and Joe Crowley for the reestablishment of the Rare Disease Congressional Caucus in the 112th Congress. The changing health care environment creates special challenges for patient with rare diseases and we who advocate for the rare disease community seek to assure that federal policies are consistent with the health needs of patients."






“The newly launched Rare Disease Caucus will provide important Congressional leadership on a range of issues significant to the rare disease community in the United States – a community representing more than 30 million persons afflicted with one of the 7,000 rare disorders,” John Crowley added.






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.






###






No comments: