World PI Week: Turning Hope into Action!

TOWSON, Md., April 21, 2015 /PRNewswire/ -- The Immune Deficiency Foundation is proud to join forces with primary immunodeficiency communities across the globe to celebrate World Primary Immunodeficiency Week (WPIW), April 22-29, for the fifth consecutive year. On this occasion patients, families, healthcare professionals and organizations work together to call for increased awareness of primary immunodeficiency diseases (PI) and mobilize to take these rare, chronic diseases out of the shadow through concerted global action.

Focused on the message "Test. Diagnose. Treat," World PI week unites, empowers and engages all global stakeholders. Together individuals, families, healthcare professionals, organizations and industry partners will advocate for testing, optimal care and the best possible treatment, including access to appropriate treatments such as prophylaxis immunoglobulin (Ig) therapy, antibiotics, antifungal medications, bone marrow transplants, or gene therapy. Primary immunodeficiency diseases are complex diseases requiring complex therapies; while classified as rare, PI affects more than six million people worldwide with no gender, age or geographical boundaries.

PI occurs in persons with an immune system that is either absent or deficient in its ability to function, caused by hereditary or genetic defects. PI can present in the form of "common" infections, sometimes leading physicians to treat the infections while missing the underlying cause, allowing the illnesses to reoccur and leaving the patient vulnerable to vital organ damage, physical disability, or even death.

One in 1,200¹ people are suspected to live with PI that significantly affects their health. However lack of awareness means that between 70 to 90% of those with PI remain undiagnosed, with their healthcare practitioners treating PI related infections as common occurrences. With early diagnosis, proper care and optimal treatment, PI can be managed, saving patients from lifelong disabilities, unnecessary vaccinations and lengthy hospital visits. Diagnosing PI early can help improve patients' conditions allowing them the opportunity to live full and rewarding lives.

This year for WPIW, organizations around the world are promoting awareness through community initiatives, educational meetings for patients, social media outreach, walkathons, lectures in schools, hospital symposia and media events, including a global balloon launch in over 100 locations around the world! 

For more information on World PI Week, go to: www.worldpiweek.org. 

About World PI Week
Each year, organizations across the globe come together to promote awareness of primary immunodeficiency diseases (PI) during World PI Week, April 22-29. The World PI Week Partners, including organizations and stakeholders dedicated to the PI community, coordinate global efforts to bring attention to these rare, chronic diseases:

ASID, African Society for Immunodeficiencies
CIS, Clinical Immunology Society
EFIS, European Federation of Immunological Societies
ESID, European Society for Immunodeficiencies
Immunodeficiency Canada
IDF, Immune Deficiency Foundation (IDF)
INGID, International Nursing Group for Immunodeficiencies
IPOPI, International Patient Organisation for Primary Immunodeficiencies
JMF, Jeffrey Modell Foundation
LASID, Latin American Society for Immunodeficiencies
PPTA, Plasma Protein Therapeutics Associations

The World PI Week Partners thank Baxter and CSL Behring for supporting WPIW 2015.

About The Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization in the U.S. dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. To learn more about IDF, visit www.primaryimmune.org, or call 800-296-4433.

¹ J.M Boyle, R.H. Buckley -  Population Prevalence of Diagnosed Primary Immunodeficiency Diseases in the United States; Journal of  Clinical Immunology (2007) 27:497–502

SOURCE Immune Deficiency Foundation

Related Links

http://www.primaryimmune.org