Immune Deficiency Foundation and the power of connection in improving care for people with PI in the US

“Every day a small but very passionate team wakes up with one goal in mind: to improve the diagnosis, the treatment and the quality of life of every person who is affected by Primary Immunodeficiency.”
Jorey Berry – President & CEO, Immune Deficiency Foundation

Immune Deficiency Foundation ’s work is grounded in the belief that the patient perspective must be heard by those who shape health policies. The foundation actively shares the experiences, challenges and priorities of the PI community with decision makers, especially those who influence access to diagnostics and treatment.

“We believe it is our job to share the patient perspective with decision makers, especially those who make decisions about patients’ ability to access the diagnostics and treatments they need.”
Jorey Berry – President & CEO, Immune Deficiency Foundation

One of the areas where Immune Deficiency Foundation is leading efforts is ensuring that any financial assistance a person receives to afford their treatment is properly recognized by their health insurance company, rather than becoming a hidden barrier to care.

Early and accurate diagnosis is another crucial focus. Immune Deficiency Foundation is an active voice on newborn screening, advocating for the inclusion of additional Immunodeficiency conditions in screening panels. Expanding these panels can enable broader and earlier diagnosis, giving children with PI a better chance at timely treatment and improved long-term outcomes.

Connection with plasma donors is also a key part of Immune Deficiency Foundation’s work. Through the Plasma Ambassador Program, volunteers from the PI community visit plasma donation centers to thank donors and talk with staff. By sharing their stories and experiences, they help donors and professionals see the real people behind plasma-derived therapies, the individuals and families who benefit directly from every donation. Several KEDPLASMA plasma collection centers, a Kedrion Biopharma company, have also joined the program, further strengthening this bridge between donors and the PI community. This simple human connection reinforces the idea that each act of donation can change someone’s daily life.

The emotional impact of these stories is profound. Jorey recalls how deeply they resonate:

“When someone shares with you something so personal as their health, especially when it has been a difficult journey, that really stays with you.”
Jorey Berry – President & CEO, Immune Deficiency Foundation

The experiences of parents raising a child with PI, and of children learning to navigate the world with a rare condition, are powerful reminders of why this work matters and why continued advocacy is essential.

The collaboration between Kedrion and Immune Deficiency Foundation over the years reflects a shared commitment to empowering patients, strengthening education, and advancing care pathways for people living with PID.