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NORD’s Washington Office
NORD provides advocacy for all members of the rare-disease community. We strive to focus public attention on the need for:
- funding for research
- access to treatments
- fair and reasonable insurance and reimbursement options
Every voice is important in
this process. Please join us and make your voice heard.
NORD Washington Office
1779 Massachusetts Avenue,
Suite 500
Washington, DC 20036
Telephone: (202) 588-5700
Fax: (202) 588-5701
Diane Dorman
NORD Vice President of Public
Policy
ddorman@rarediseases.org
Mobile: (202) 258-6457
Joi Ridley
NORD National Urban Fellow
for 2009/10
jridley@rarediseases.org
Mobile: (202) 210-9428
CURRENT ISSUES
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National Organization for Rare Disorders
Remarks Presented Before The
FDA Pulmonary-Allergy Drugs Advisory Committee
Silver Spring, Maryland
March 9, 2010 Details
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Improving Patient Access to Clinical Trials
NORD was one of more than 100 organizations to sign on in support of legislation known as the Improving Access to
Clinical Trials Act, which seeks to provide potentially life-saving treatments through clinical trials to people
with rare diseases who may have few, if any, other treatment options. Details.
Eliminating Lifetime Insurance Caps
NORD recently sent the following message to its Member Organizations:
CONTACT YOUR SENATORS AND REPRESENTATIVE
Act Now to Eliminate Lifetime Caps!
While NORD has been excited to see the elimination of lifetime caps included
in each health reform proposal currently being considered by Congress, the old
adage "the devil is in the details" still rings true. Although all of the bills
eliminate lifetime caps, in some proposals the provision will be delayed and in
others there is no requirement for existing plans. We need you to write your
members of Congress to ask for lifetime caps to be prohibited immediately.
The way the bills are currently drafted would result in many people potentially
facing lifetime caps, even after health reform is enacted. Individuals with
employer-sponsored insurance could face caps until 2018 or possibly indefinitely
if their insurance coverage does not change. This is unacceptable. NORD has been
advocating for the immediate elimination of lifetime caps in both new and
existing plans in all insurance markets.
Congressional leaders are currently working to combine the various health reform
bills into House and Senate versions before they can be voted on by each
chamber. Now is the time for everyone who wants lifetime caps to be eliminated
to contact Congress.
Please e-mail your members of Congress TODAY to ask that lifetime caps be
eliminated immediately. Sample letters have been provided (see below) that you
can personalize with information about how your family or your members are
affected by insurance problems, the annual cost of care and, especially,
lifetime caps. If you have hit a lifetime cap, please be sure to include that as
well. Here are sample letters that you can personalize for
your Senator and
Representative.
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