PPTA Recognizes World Hemophilia Day
The Plasma Protein Therapeutics Association (PPTA) recognizes World Hemophilia Day, an international event sponsored by the World Federation for Hemophilia (WFH) and designed to raise awareness of people living with inherited bleeding disorders.
World Hemophilia Day
Since 1989, World Hemophilia Day had been celebrated annually on April 17, to increase awareness of hemophilia and other inherited bleeding disorders. An estimated 1 in 1000 have a bleeding disorder; yet 75% receive inadequate or no treatment. This year's theme "Close the Gap" seeks to remedy that so treatment will be available globally to all that need it.
People around the world living with hemophilia and other inherited bleeding disorders rely upon the life-saving therapies produced by our member companies. The unique nature of plasma protein therapies and specifically blood clotting factor requires constant vigilance. PPTA and its members work tirelessly to ensure the quality and safety of these life-saving therapies. In both Europe and the U.S., PPTA works to advocate on behalf of patients with these disorders.
In Europe, the emergence of the European Hemophilia Consortium has proven an effective collaborator, in addition to the nation level hemophilia patient representative groups. In particular, PPTA shares an interest and research agenda that uses health technology assessments (HTAs) as a valuable tool for demonstrating the cost effectiveness of plasma protein therapies.
In the U.S., the Association works to ensure access to medically appropriate blood clotting factor in state funded public health programs, including Medicaid via comment letters on pending legislation and educational visits with decision-makers.
PPTA administers standards and certification programs, is engaged in a broad range of regulatory issues, and works to advocate and protect patient access to these therapies. Jan M. Bult, PPTA President and CEO said, "I am particularly proud of these programs which help deliver safe and effective therapies." Additionally, PPTA collaborates with hemophilia organizations through its stakeholder meetings, publications and advocacy events. "Treatment for all is an important goal and PPTA salutes WFH in this endeavor."
Today these therapies enable patients with plasma protein disorders to lead active, productive lives. The progress has been remarkable, but there is much work to be done. World Hemophilia Day shines a much-needed spotlight on the important needs of the bleeding disorder community, as well as the need for raising awareness, early diagnosis and effective treatment.
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