PPTA Recognizes World PI Week (April 22-29, 2013)
The Plasma Protein Therapeutics Association (PPTA) stands together with the global primary immunodeficiency disease (PID) community to promote World PI Week, a global campaign aimed to raise awareness and improve diagnosis and treatment of PID.
"People throughout the world living with PID rely upon the life-saving therapies produced by our member companies. I am proud that PPTA has been a strong supporter of the PID community," said Jan M. Bult, PPTA President and CEO. PPTA is a strong advocate for patients with PID. It is estimated that 2% of the population may have some form of PID and as many as 90% of those may be undiagnosed.
The unique nature of rare diseases, as well as plasma protein therapies requires constant vigilance to promote awareness and protect therapeutic availability. In both Europe and the U.S., PPTA collaborates with patient organizations such as the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the Immune Deficiency Foundation (IDF) and the Jeffrey Modell Foundation through stakeholder meetings, publications and advocacy events.
In addition, one of the Association’s signature projects, FIND-ID, a national network in Germany designed to foster cooperation among hospital physicians, private medical practices, immunodeficiency centers and patient representatives. The objective of FIND-ID is to improve early diagnosis and effective treatment of PID. PPTA also is a key sponsor of the European Society for Immunodeficiencies (ESID) Registry. One of the largest registries of its type in the world, the database contains information on 15,000 PID patients that has provided an impetus for research and national registries. In the U.S, PPTA was a proponent of the Medicare IVIG Access Act which President Obama signed into law in January of this year.
PPTA works diligently to protect patient access to life-saving plasma protein therapies. In addition, it is engaged in a broad range of regulatory issues and administers standards programs that help to ensure their safety and quality.
Plasma protein therapies enable PID patients to lead active, productive lives. Despite remarkable progress, there is much work to be done. World PI Week shines a much-needed spotlight on the important needs of PID.
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