The SADS Foundation supports
the goals of the Kakkis EveryLife Foundation and their CURETHEPROCESS Campaign (http://www.curetheprocess.org/goals)
to inspire science-driven public policy that will increase the
predictability of the regulatory process for rare disease treatments.
If you wish to advocate for a
$10 million appropriation for the FDA to create a new drug review division for
rare diseases, then Congress needs to hear from you today, April 15, 2010, by 4:00p.m. Eastern to tell them
how important this appropriation request is to you. The deadline for
the Senate to submit their requests for FDA appropriations is this Friday,
April 16th.
You
can contact Senator Herb Kohl, Chairman
of the Agriculture, Rural Development and FDA Appropriations Subcommittee: (202)
224-5653 or online at http://kohl.senate.gov/contact.cfm.
Or,
you can contact Senator Samuel Brownback, Ranking
Member of the Agriculture, Rural Development and FDA Appropriations Subcommittee:
(202) 224-6521 or online at
http://brownback.senate.gov/public/contact/emailsam.cfm
Here's a sample script:
"My name is ______________ and
I (or my child, etc) have a rare disease (name of the disease). I'm calling to
ask the Agriculture, Rural Development and FDA Appropriations Subcommittee to
submit a request for a $10 Million programmatic appropriation to establish a
specialized review division in the FDA Office of New Drugs for rare genetic
diseases."
We support the efforts to
improve the FDA's regulatory process for rare diseases. Thank you for your
continued commitment to patients with very rare diseases.
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Sincerely,
Alice, Laura, Joanne, Heidi and Adrienne SADS Foundation
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