Understanding primary immunodeficiency (PI)
Understanding PI
The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Learn more about PI
Living with PI
Living with PI
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Learn more about living with PI
Get involved
Get involved
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Get involved today
Advancing research and clinical care
Advancing research and clinical care
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
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IDF advocate connections: becoming a rare disease advisory council member

January 31, 2022

The IDF Podcast · IDF Advocate Connections: Becoming A Rare Disease Advisory Council Member

For those living with rare diseases, such as PI, it is important to have a strong voice in state government and advise policymakers on critical issues related to access, coverage, and the diseases themselves. Many state policymakers are unaware of the challenges the rare disease community faces. To help bridge these gaps in knowledge, Rare Disease Advisory Councils or RDACs are created. RDACs serve as an advising body and liaison between the rare disease community and state governments. With us today to discuss their work with RDACs in their state is a panel of IDF advocates: Jessica Goddard and Rachel Goddard from South Carolina, and Marian Furst from Utah.