Awareness Efforts Focus on Increased Access to Lifesaving Immunoglobulin (Ig) Therapies
Towson, MD – For the second year, the Immune Deficiency Foundation (IDF) is partnering with the Clinical Immunology Society (CIS) to promote National Primary Immunodeficiency Awareness Month in April and World PI Week (April 22-29, 2017). Primary immunodeficiency diseases, or PI, are a group of more than 300 rare, chronic disorders in which part of the body’s immune system is missing or does not function properly. Today, with early diagnosis and appropriate therapies, many people with PI can live healthy, productive lives. It is critical that those diagnosed with PI have access to affordable, comprehensive insurance and necessary treatments.
“Now more than ever, it’s critical to bring awareness to primary immunodeficiency diseases to ensure people have access to lifesaving treatment and care,” said Marcia Boyle, IDF President & Founder. “Approximately 250,000 people have been diagnosed with a primary immunodeficiency in the U.S., and thousands more go undiagnosed and untreated. People with PI suffer from recurrent, often severe infections, and they deserve better. We encourage our community to promote awareness year round, but April is a time to come together as a community and make our voices heard.”
As organizations that work closely with the PI community, IDF and CIS want to educate the public about PI during Awareness Month and World PI Week. Although some types present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. They are caused by hereditary or genetic defects and are not contagious.
Theme of World PI Week Focuses on Access to Ig Therapy
Leading up to and throughout World PI Week, IDF and CIS will lead the PI community in raising awareness and improving access to lifesaving immunoglobulin replacement (Ig) therapy for people with these rare, chronic conditions. Ig replacement therapy, which is derived from human plasma, provides antibodies to protect against a broad range of infections, and it is life sustaining and lifelong for many with PI. Such treatments exist for people with PI, but access to them can vary significantly across continents and countries of a same region. The World PI Week aims to help drive change and equal access to quality treatment for all patients.
CIS Annual Meeting Kicked off Awareness Month
During the CIS Annual Meeting, held March 23-26, 2017 in Seattle, members of CIS presented new research findings and discussed treatments for PI with more than 600 meeting attendees. Serving as a kick-off for Awareness Month and World PI Week, IDF staff members also participated and shared the Foundation’s resources for the PI community. The organizations will also mail IDF educational materials to all CIS members.
“The Clinical Immunology Society promotes excellence in the care of patients with immunologic/inflammatory disorders, including primary immunodeficiency diseases. It is essential that patients receive proper treatment under the care of a specialist,” Roshini Sarah Abraham, PhD, CIS President. “We are proud to partner with IDF during Awareness Month and World PI Week to help increase awareness of these complex diseases and to ensure access to lifesaving treatments.”
With early diagnosis and proper medical care, many people with PI can live long, healthy lives. For more information, visit www.primaryimmune.org or call 800-296-4433.
World PI Week: April 22-29
IDF and CIS are joining organizations across the globe to promote awareness of primary immunodeficiency diseases during World PI Week, April 22-29. IDF participates in international initiatives with the objective to Test, Diagnose and Treat! For more information about World PI Week, visit www.worldpiweek.org.
About the Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases (PI) through advocacy, education and research. IDF provides accurate and timely information for individuals and families living with PI and offers valuable resources. To learn more about IDF, visit www.primaryimmune.org.
About the Clinical Immunology Society
The Clinical Immunology Society (CIS), established in 1986, is devoted to fostering developments in the science and practice of clinical immunology. CIS works to facilitate education, translational research and novel approaches to therapy in clinical immunology to promote excellence in the care of patients with immunologic/inflammatory disorders. To learn more about CIS, visit www.clinimmsoc.org.