Born Without Defenses: Advancing Care for Primary Immunodeficiency

In honor of Rare Disease Day, we sat down with Tammy Black, Chief Communications Officer at the Immune Deficiency Foundation (IDF), to discuss primary immunodeficiency (PI): a rare, lifelong condition that affects thousands of people and is frequently misdiagnosed. Tammy shares how living with a chronic illness shapes daily life and why education, advocacy, and strong community support are essential for patients and families.Building on our ongoing conversations about rare diseases and patient access, this episode highlights the power of awareness and connection in improving outcomes for those living with PI. Tune in to learn more about how you can get involved and support IDF, CTI’s Q1 Charity of the Quarter.01:00 Tammy Black explains the Immune Deficiency Foundation’s mission and primary immunodeficiency.03:35 Why many patients go decades without answers and don’t appear ill despite serious health risks.05:40 She connects PI experiences to pandemic‑era lessons and highlights how millions live in constant protection mode.06:30 Barriers to adult diagnosis, lack of immune health conversations, and how IDF’s assessment tool helps patients advocate for themselves.08:50 How IDF reduces isolation through support groups, peer matching, walk events, and national conferences.10:30 Patient handbooks, webinars, school and clinician toolkits, and resources for newly diagnosed families.13:55 Policy priorities including vaccines, healthcare access, and coverage challenges for immunoglobulin therapy.15:40 How IDF partners with researchers and regulators to advance gene research and expand newborn screening for severe immune disorders.18:10 Ways listeners can support IDF through donations, fundraising, volunteering, and plasma donation.20:10 Tammy shares details about IDF’s documentary debuting publicly on YouTube for Rare Disease Day (Feb 28).