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RARE DISEASES ACT SIGN-ON LETTER

DEADLINE FRIDAY, SEPT. 14, 2001, 12:00 NOON - RARE DISEASES ACT SIGN-ON LETTER

Not since the passage of the Orphan Drug Act of 1983 has a more important piece of legislation come before the U. S. Congress that impacts the entire rare disease community so profoundly. Your help is needed to send a strong message to our elected officials that S. 1379 is of great importance to the approximately 25 million Americans suffering with rare disorders. This is reminder that if you wish to sign-on to the letter being sent to all Senators asking them to co-sponsor the Rare Diseases Act of 2001 (S. 1379), the deadline is 12 noon this Friday. In order to be included in the growing number of organizations participating, all you have to do is call or e-mail Diane Dorman by that time and your organization will be included. Contact information is below.

PLEASE NOTE NEW ADDRESS INFORMATION:

Diane E. Dorman Sr. Dir. for Public Policy National Organization For Rare Disorders - Washington Office 1050 17th Street, NW, Suite 600 Washington, DC 20036 Phone/202.496.1296 x 3014; Fax/ 202.463.6245 Cell/202.258.6457 ddorman@rarediseases.org

Source Date: Sep 13 2000