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.
You can find Arielle advocating for fellow immunocompromised individuals in her Louisiana hometown as part of the Immune Deficiency Foundation's advocacy outreach efforts, but her journey to the state house started at birth.
“The first year of my life was spent in isolation at a hospital. At the time, I was only the 14th person in the world with the diagnosis.”
Arielle was born with severe combined immunodeficiency (SCID) and understood the feelings of being rare and secluded at an early age.
Things took a positive turn when her family discovered the Immune Deficiency Foundation soon after and brought her to events to connect with others like her.
Looking back now as an adult, Arielle reflects “Now that I am older, I am able to fully appreciate the events. They’ve given me a place to belong and feel so different.”
Today, she uses the life tools and resources the Immune Deficiency Foundation has equipped her with to speak out and speak up for fellow individuals living with primary immunodeficiencies (PI).
“Advocating for me means letting others know they are not alone. Others may not have heard of PI, so bringing awareness plays a big part. It’s the small things that make a big impact.”
Her life journey with the condition and early involvement with the Immune Deficiency Foundation has given her the opportunity to lend a unique perspective and voice to advocacy issues, which increases visibility to PI and impacts the wider community.
For Arielle, it’s all about connecting with fellow PI community members like her. For those who may just be receiving a diagnosis she says, "the burden of being overwhelmed isn’t a burden you need to carry alone, which takes me back to the word community.”
Advocacy resources and opportunities are only possible due to the generosity of supporters of the Immune Deficiency Foundation. Will you speak up for the immunocompromised and give today so that individuals like Arielle can have a support system and life-long tools to lend their voice for advocacy efforts?
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
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