PPTA Recognizes World PI Week (April 22-29, 2012)
ANNAPOLIS, MD - The Plasma Protein Therapeutics Association (PPTA) recognizes World PI week.
About World PI Week
World PI Week aims to raise the recognition and diagnosis of primary immunodeficiencies (PI) as an increasingly important group of diseases. The World PI Week website will help you drive activities to make a difference by providing the framework, toolkits, including important resources to help to drive and to stimulate efforts and initiatives to improve the recognition, diagnosis, treatment and quality of life of people with PI world-wide.
"People around the world living with primary immune deficiency diseases (PID) s 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, President and CEO.
The unique nature of rare diseases, as well as plasma protein therapies, requires constant vigilance to promote awareness and protect therapeutic availability. 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 with consumer organizations such as the International Patient Organisation for Primary Immunodeficiences (IPOPI), the Immune Deficiency Foundation (IDF) and the Jeffrey Modell Foundation to advocate on behalf of patients with these diseases.
In Germany, PPTA supports FIND-ID, a national network initiative designedto 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 Immuno Deficiencies (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 advocates on behalf of patient access to therapies and supports patient driven legislation. In particular, the Association is a proponent of the Medicare IVIG Access Act [H.R. 1845, sponsored by Rep. Kevin Brady (R-TX); and S. 960, sponsored by Senator John Kerry (D-MA)].
PPTA also 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 PID organizations through its stakeholder meetings, publications and advocacy events. "Saving and improving lives of patients and ensuring access to plasma protein therapies is our highest priority" Bult added.
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 PI Week shines a much-needed spotlight on the important needs of the PID community; as well as, the need for raising awareness, early diagnosis and effective treatment.
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