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60+ Patient Organizations Join NORD in Letter to Congress Today

WASHINGTON DC, July 25, 2013-----More than 60 rare disease patient organizations signed a letter delivered to key members of Congress today by the National Organization for Rare Disorders (NORD) in support of maintaining the Orphan Drug Tax Credit.

The letter quotes NORD medical adviser and former Director of FDA's Office of Orphan Products Development Marlene Haffner, MD, MPH, on the importance of the tax credit as an incentive for the development of treatments for rare diseases.

"For 30 years, NORD has been trying to keep the Orphan Drug Act safe from those who might wish to change it," said NORD President and CEO Peter L. Saltonstall.  "We appreciate the support of the many rare disease patient organizations who joined with us in opposing provisions currently under consideration that might eliminate or reduce the tax credit."

The tax credit is one of several incentives in the Orphan Drug Act of 1983 designed to encourage the development of treatments for rare diseases.  Largely as a result of those incentives, more than 300 new therapies for rare diseases have been approved by FDA since 1983, and many more are in the research pipeline.  Only 10 were developed by industry in the decade before 1983.

NORD's letter was addressed to the chairs and ranking members of the Senate Finance Committee and House Ways & Means Committee.  The letters were hand-delivered to Capitol Hill today.

The quote from Dr. Haffner, who brings unique experience to this issue through having served for many years as director of the office at FDA that serves as a point of liaison with those developing treatments for people with rare diseases, is as follows:

"Tax credits are an integral part of the Orphan Drug Program and are a lifeline to small and medium-sized firms as they are developing and growing their business and their products to treat rare diseases.  The tax credits are a very small portion of tax revenue, but a very large incentive for the development of products for the treatment of rare diseases, many of which are life-threatening; 50% of those affected by these diseases are children."

NORD was established in 1983 by patient advocates who had helped get the Orphan Drug Act enacted by Congress and signed by President Reagan.  It is a nonprofit organization representing the 30 million American men, women and children affected by rare diseases.

Read the letter and view the list of patient organizations

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