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.
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.
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.
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.
Marian Furst, an active member of the IDF community, was diagnosed with Common Variable Immune Deficiency (CVID) in the spring of 2010. After receiving her diagnosis, Marian proceeded to learn as much as she could about primary immunodeficiency (PI), which led her to the Immune Deficiency Foundation (IDF). She immediately got involved and began attending multiple events, including the 2011 IDF National Conference held in Phoenix, AZ. After the conference, Marian became more involved by volunteering her time as a Peer Support Coach, attending more events, and later started advocating for the PI community through IDF Advocacy Day.
Today, Marian continues to make a positive impact as an IDF Health Access Advocate by being consistently involved in legislation and state policies regarding those with rare diseases in her home state of Utah. Even during this scary and hectic time that we’re all going through, she remains actively involved, creating unity in the PI community. At the start of the pandemic, Marian was in contact with her senator, encouraging him to vote for a bill to establish a state Rare Disease Advisory Council and volunteered to serve as a member of the council. Thanks to Marian and the others who spoke out to their legislators, the bill passed both houses of the legislature in March and was signed by Governor Herbert of Utah.
In addition, Marian participated in IDF Virtual Advocacy Day which was held on April 23, 2020. As part of the day, Marian advocated for issues to improve community access to quality care; screening and diagnosis; protections for the immunocompromised; and research and emerging therapies.
Marian states, “I know that IDF is a solid organization that I can feel good about representing, and I know the PI community and I can both gain from my efforts.”
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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