“The Gatesville Zebras” are a group of three 7-year-old boys living in Gatesville, TX who have been diagnosed and are living with X-Linked Agammaglobulinemia (XLA). Their story was recently featured on KWTX News of Waco, Texas. Click here to watch their segment featuring IDF Vice President of External Relations/Future President and CEO, John G. Boyle.
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Rest assured, your information is safe in IDF PI CONNECT. We use the latest health information technology to ensure your information is secure, including adhering to federal and state regulations, and maintaining comprehensive standards, frameworks and security controls.
PI CONNECT is the IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI) developed by the Immune Deficiency Foundation (IDF), with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI.
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COBRA, the Consolidated Omnibus Budget Reconciliation Act, gives workers who lose their health benefits the right to choose to continue group health benefits provided by their plan under certain circumstances.
In 2012, in response to IDF’s advocacy, Congress enacted the Medicare IVIG Access and Strengthening Medicare and Repaying Taxpayers Act of 2012 (PL 112-242) that created a special Medicare demonstration project to evaluate the impact of a permanent intravenous immunoglobulin (IVIG) home infusion Medicare benefit on costs of providing the benefit. The law directed Medicare to test a combined or “bundled” payment for the drugs, services and supplies. This project is a necessary step toward a permanent Medicare IVIG home infusion benefit.