IDF Rolls Out the Welcome Mat for Members
Onboarding programs for new staff has long been a priority for many organizations. Now the Immune Deficiency Foundation (IDF) has extended this concept further, offering an onboarding program to welcome members of the community who may be unfamiliar with IDF programs and services. By taking the time to orient members to IDF, the organization
Read MoreClosing the Gap on Racial Disparities
A MESSAGE FROM JOHN G. BOYLE, IDF PRESIDENT & CEO What IDF does as a patient advocacy organization is to stand up for the vulnerable. We draw attention to those who are marginalized and overlooked. Every one of us with a rare disease will experience vulnerability, powerlessness, or marginalization due to how we were born. Most members of
Read MoreConcerns about care during pandemic shortens stay abroad
This blog post is part of IDF’s Stories Project, designed to provide a venue for those living with PI to share their experiences. Some are first-person accounts, others are written by IDF staff. If you have a story you’d like to share, email us at stories@primaryimmune.org. In this Stories blog, Harper Spero discusses how the pandemic has
Read MoreNewborn Screening: What Parents Need to Know
Babies can look healthy at birth and still have a serious health condition, which is why newborn screening tests are completed before discharge from the hospital. A few drops of blood, taken from a baby’s heel, are tested for a number of disorders including a potentially fatal disorder of the immune system known as Severe Combined Immunodeficiency
Read MoreDonor Spotlight: Ken and Lisa
Ken and Lisa Steffes’ journey with primary immunodeficiency (PI) first began when their daughter, Liz Steffes Hafiz, was diagnosed with Common Variable Immune Deficiency (CVID) in 2006 at the age of 16 years old. After receiving their daughter’s diagnosis, their immunologist immediately introduced the Steffes family to the Immune Deficiency
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