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One of the APF’s earliest efforts was testifying before Congress in support of the Orphan Drug Act (1983). Panhematin, which remains the only specific treatment for acute porphyria available in the United States, was the first drug to be approved under the ODA. The APF continues to be very active in the Treatments, testing, and research for Porphyrias.
Since then, we have published materials on all the porphyrias for a patient audience; developed a comprehensive website and the educational DVD Porphyria Live; educated doctors at medical conferences, and through mailings and in-hospital seminars; helped thousands of patients in the U.S. and internationally find their way to diagnosis and treatment; served as liaison between the patient/primary care and research communities; and continually sought funds to improve research and training, diagnosis and care for the Porphyrias.
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