FOR IMMEDIATE RELEASE CONTACT: Todd Mitchell

March 1, 2011 202-297-0232

REP. LANCE ANNOUNCES RARE DISEASE CAUCUS
NJ’s John Crowley Joins 7th District Lawmaker To Help Bring Awareness and Education Effort On Nat’l Rare Disease Day
WASHINGTON, DC — U.S. Rep. Leonard Lance (NJ-7) announced the reestablishment of the Rare Disease Congressional Caucus for
the 112th Congress. The Seventh District lawmaker, who will serve as co-chair of the Caucus with Rep. Joe Crowley (D-NY), made the
announcement at a Capitol Hill press conference Monday on National Rare Disease Day 2011 with other members of Congress and rare
disease advocates.

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.”

Joining Lance at the Caucus kick-off was rare disease advocate John Crowley. Crowley is the 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 Crowley’s decade-long search to find a cure for a rare illness afflicting two of their children.

“The newly launched Rare Disease Caucus will provide important Congressional leadership on a range of issues significant to the rare
disease community in the U.S. – a community representing more than 30 million persons afflicted with one of the 7,000 rare disorders,”
John Crowley said. “We are particularly pleased to have Leonard Lance as the co-chair of this bipartisan caucus in the House. Rep. Lance's
leadership, commitment and passion on the issues important to the rare diseases community will help to advance cures and treatments for
some of the most vulnerable citizens our society – citizens that we all know as our moms, dads, children and neighbors."

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.

"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."

PHOTO NOTE: John Crowley (at podium) is flanked (from left to right) by U.S. Reps. Bob Dold (R-IL), Lance and Joe Crowley (D-
NY). For a high-resolution copy of this picture please email Todd Mitchell at todd.mitchell@mail.house.gov.
###