June 23, 2016
US – IDF and CIS collaboration for WPIW
Clinical Immunology Society and Immune Deficiency Foundation Collaborate for National Primary Immunodeficiency Awareness Month and World PI Week
The Clinical Immunology Society (CIS) and the Immune Deficiency Foundation (IDF) collaborated to celebrate National Primary Immunodeficiency Awareness Month in the U.S. this April and World PI Week, April 22 -29, 2016. The organizations view Awareness Month and World PI Week as a critical opportunity to educate the public about primary immunodeficiency diseases (PI).
“While approximately 250,000 people have been diagnosed with a primary immunodeficiency in the U.S., thousands more go undiagnosed and untreated,” said Marcia Boyle, IDF President & Founder. “IDF is committed to raising awareness to help lead to early diagnosis and appropriate treatment for people who are suffering from recurrent, often severe infections but have not yet been diagnosed with PI. We promote awareness of primary immunodeficiency year round, and April is a key time to bring attention to these rare, chronic diseases.”
“The Clinical Immunology Society is devoted to fostering developments in the science and practice of clinical immunology to promote excellence in patient care. There have been many strides made in the treatment and care of patients with primary immunodeficiencies, and it is critical for patients to receive proper treatment under the care of a specialist,” Luigi D. Notarangelo, MD, CIS President. “We are pleased to partner with IDF during Awareness Month and World PI Week to help increase understanding of these complex diseases on a national and international level.”
To engage the community, both organizations mailed IDF educational materials to all CIS members for them to share with their patients and families. During the CIS Annual Meeting (April 14-17, 2016) in Boston, MA, USA, members of CIS presented new research findings and discussed treatments for PI with more than 600 meeting attendees. IDF distributed the Foundation’s materials and resources and gave participants PI Awareness t-shirts that encouraged people to “THINK ZEBRA!” A group photo was taken of meeting attendees wearing their primary immunodeficiency awareness t-shirts.
New Young Adult Webinar Series from Immune Deficiency Foundation
The new Young Adult Webinar Series from the Immune Deficiency Foundation (IDF) was developed specifically for young adults to meet the needs and interests of this group. Participants can ask questions and discuss concerns with a live panel who share similar experiences of living with primary immunodeficiency diseases (PI). They can learn tips for tackling the unique issues faced by young adults with PI (ages 18-30), all while connecting with others in the community.