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SADS Action Alert!
Greetings!
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.


Sincerely,
 
Alice, Laura, Joanne, Heidi and Adrienne
SADS Foundation