NORD's
Washington Office
 Check here to read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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NORD Announces Rare and
Neglected Diseases Caucus
From: Diane Edquist Dorman,
Vice President, Public Policy
Date: July 13, 2010
The National Organization for
Rare Disorders (NORD) is pleased to tell you that U.S. Representatives
Joseph Crowley (D-NY) and Fred Upton (R-MI) have formally announced
the newly-established Rare and Neglected Diseases Caucus.
Note: Congressional Caucuses
are formed by Members to provide a forum for issues or legislative agendas.
A number of caucuses exist in the U.S. Congress and their primary function
is to draw attention to issues of importance to their membership.
As co-chairs of the Caucus,
Crowley and Upton will focus on:
Bringing Congressional attention
to the 6,800 known rare diseases that currently have no approved therapies
Ensuring sufficient funding
for research and orphan product development
Exploring ways to incentivize
companies to create new drugs, biologics and humanitarian use devices
Providing an opportunity for
Members of Congress, families and advocacy groups to exchange ideas
and policy concerns
Both Crowley and Upton are
looking to you to encourage your Representative to become a member of
this important Caucus.
Call the U.S. Capitol Switchboard
at (202) 224-3121 today and ask to be connected to your Representative's
office. If you're not sure who your Representative is, go to http://www.house.gov
and enter your zip code to find out the name.
Here are a few tips for phoning
Congress from "Congress at your Fingertips."
Telephone calls are usually
taken by a staff member. Ask to speak with the health legislative assistant
(Health LA) who handles healthcare related issues for the Representative.
After identifying yourself as a constituent, ask to speak directly to
the LA. If he/she is not available, please ask to leave a brief message,
such as: Please tell Representative (Name) that I would like him to
join the Rare and Neglected Diseases Caucus being co-chaired by Joseph
Crowley and Fred Upton.
State your reasons for supporting
the Caucus. You may also request a written response to your telephone
call. Remember to leave your full address and phone number at the end
of the message.
The "Dear Colleague" letter
is available with additional information you might find useful. If you
have questions or just need to get more information, just send me an
email at ddorman@rarediseases.org or call the office (202) 588-5700.
Please remember to let me know
who you spoke with and the outcome of that call so we can follow-up.
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