Wednesday, December 12, 2012

FDA Honors APF Executive Director, Desiree Lyon Howe

FDA Honors APF Executive DirectorDesiree Lyon Howe


 Our very own APF Executive Director receives a great honor.....

 January 4, 2013 will mark the 30th Anniversary of the enactment of theOrphan Drug Act. In recognition of this important legislation and accomplishments of members of the rare disease community in their efforts to support and develop treatments for individuals with rare diseases, the Federal Drug Administration plans to highlight 30 Heroes who have made clinical, research, advocacy and regulatory contributions over these many years.

 The Office of Orphan Products Development (OOPD) plans to showcase the 30 Heroes on January 7, 2013 during a program that includes invited presenters such as Commissioner HamburgFrances Collins, Director, NIH;Representatives Henry Waxman and Orrin Hatch, or their designees; Peter Saltonstall, CEO, NORD; and Abbey Meyers, as well as former and current OOPD staff.

 One of these Heroes is Desiree Lyon HoweCo-Founder and Executive Director of the American Porphyria Foundation, who spoke in front of Congress to support the Orphan Drug Act and helped bring Panhematin® to the forefront of the first Orphan drug.  Panhematin® was the first orphan designated drug to receive marketing approval in 1983.  It is used to relieve recurrent attacks of acute intermittent porphyria (AIP) and other acute porphyrias.  In acute porphyrias, an important part of hemoglobin called heme is not made properly, causing varying symptoms with the most common being severe abdominal pain.   Desiree was 17 years old when she had her first attack and suffered many years undiagnosed.  In 1982 she was given experimental hemin at the National Institutes of Health, tremendously improving her quality of life.  She continues to be an active rare disease advocate today.

  Congratulations to Desiree Lyon Howe, and thank you to all of you who have volunteered for the ongoing porphyria studies. Each and every participant is helping us all get closer to better treatment, and a cure for Porphyria.

Remember.... Research is the key to your cure!

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