Children's Rare Disease NetworkTo Our Campaign Partners
The time is now – We need your help.
Dr. Kakkis has just spent a week in Washington DC meeting with Members of Congress to secure a $10 million appropriation for the FDA to create a new drug review division for rare diseases. Now Congress needs to hear from you.
The deadline for the Senate to submit their requests for FDA appropriations is this Friday, April 16th.
We need you to call Senator’s Kohl’s and Brownback’s Office today or tomorrow, but we need the call done no later than this Thursday, April 15th, 4:00 p.m. Eastern; to tell them how important this appropriation request is to your organization and the patients you represent.
Please see the suggested script below:
For Senator Kohl – Dial: (202) 224-5653
For Senator Brownback – Dial: (202) 224-6521
My name is ______________ and I am (executive director) of the X Foundation calling on behalf of the X number of patients who are affected by a rare disease.
A. I’m calling to ask Senator Kohl, as Chairman —
B. I’m calling to ask Senator Brownback, as Ranking Member —
— of 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 Kakkis EveryLife Foundation’s 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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