Activated PI3K delta syndrome (APDS)
Activated PI3K delta syndrome (APDS) is a rare primary immunodeficiency (PI) that is often misdiagnosed as CVID or another antibody deficiency.
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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.
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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.
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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.
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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.
Find APDS clinical trials
See if you qualify to participate in clinical trials evaluating new treatments and/or diagnostics for APDS.
Diagnosis
Genetic testing is the only way to definitively diagnose APDS. Since PIs are inherited, family members of a confirmed patient should be genetically tested. While family members may not have the same symptoms or any symptoms, they may still carry the genetic variant and pass it on to their children.
Products approved to treat APDS in the U.S.
Joenja
(Manufacturer: Pharming
)
Leniolisib.
Approved to treat: Activated PI3K delta syndrome (APDS).
Ages: 12+
Report side effects/adverse events at safetyUS@pharming.com or +1-800-930-5221.
Other organizations that support APDS patients and families
The Assistance Fund
The Assistance Fund is an independent 501(c)(3) organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.
Visit allaboutAPDS.com
This informational website for those affected by activated P13K delta syndrome (APDS) was developed by Pharming Healthcare, Inc. and intended for residents of the United States.
This page is supported by
Diagnosis
This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice. Additionally, links to other resources and websites are shared for informational purposes only and should not be considered an endorsement by the Immune Deficiency Foundation.
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