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Rep. Leonard Lance to Chair Congressional Rare Disease Caucus

Washington, DC, December 17, 2014 ― Congressman Leonard Lance (NJ-07) has announced he will continue as the Republican Chair of the Congressional Rare Disease Caucus in the 114th Congress that will begin in January.  Lance has chaired the caucus for four years with Congressman Joe Crowley (NY-14), who will continue to serve as the Democratic Chair.

The Congressional Rare Disease Caucus is a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community and build support for legislation that will improve the lives of people with rare diseases.

“I have a great interest in the work of the Rare Disease Caucus.  I am impressed and humbled continually by the tireless advocates and their commitment to those suffering from challenging diseases — many without any treatments or cures,” Congressman Lance said.  “Our job in the Rare Disease Caucus is to help them meet with our Nation’s leaders, question the decision makers in both the public and private sector and connect with the best minds in innovation.  I look forward to building on our success in the new Congress.”

New Jersey advocate Lisa Schill, a member of RASopathies Network USA, participated in many of the Caucus activities.

“Thirty million Americans are affected by more than 7,000 rare diseases.  Ninety-five percent of them do not have a single FDA approved treatment,” Schill said.  “We need a Rare Disease Caucus to help streamline the process of drug development by creating incentives for companies, reforming the policies and procedures of the FDA, to result in more efficient production that will save money, time, and most importantly, precious lives.  I thank Congressman Lance for his leadership and look forward to continued progress next Congress.”

Lance has vowed to continue championing two causes close to the rare disease community: the Energy and Commerce Committee’s 21st Century Cures Initiative and the MODDERN Cures Act.

Lance, a member of the Energy and Commerce Health Subcommittee, has joined in the year-long effort to work to ensure there is no gap between 21st Century science and the Washington regulatory process.

This work includes supporting better medical research to keep the United States at the global center of biomedical innovation.  Legislation encompassing lessons from the 21st Century Cures Initiative is expected early in the next Congress.

Lance has also vowed to continue working on his Modernizing Our Drug & Diagnostics Evaluation and Regulatory (MODDERN) Cures Act which will update the Nation’s drug evaluation process to encourage the discovery and development of new treatments for chronic and rare diseases.  The measure would also create a system that rewards efficiency and effectiveness to the benefit of all persons with chronic diseases.

The Rare Disease Caucus, and both legislative efforts, will prioritize the drug development process in the next Congress.

Schill added, “treatments for our families will take over 15-20 years to develop. Unfortunately for most of us, time is not on our side. We need a Rare Disease Caucus to help push to streamline the process of drug development.”

Congressman Lance added, “The Rare Disease Caucus works toward results that will make a positive difference in the lives of many.  We will continue to work to achieve goals that are bipartisan, realistic and effective to give hope to the many who are counting on our efforts.”