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Next Steps for Participants of Medicare In-Home IVIG Project

Both Houses of Congress have passed, and the President has signed into law the legislation that extends the Medicare IVIG Demonstration Project. This demo project is now set to run through December 31, 2020, or until allocated funds are spent, whichever comes first. Currently, IDF is in discussions with the Centers for Medicare and Medicaid Services (CMS) about next steps for demonstration project participants. Current participants will have their October claims covered and will experience no gaps in care. CMS is reaching out to providers informing them of the project extension.

Choose Your Preferences

New IDF Website “My Account” Feature

The new IDF website makes it easier than ever to access IDF programs, resources and services. One of the exciting new features making that possible is My Account. By creating your own account, you can register for events, order publications, submit questions through ASK IDF, and update your communications preferences.

Try it out and tell us what you think!

IDF 2017 National Patient Survey Will Launch in a Few Weeks!

Your Input Creates a Better Understanding of PI

The IDF 2017 National Patient Survey will be available in October 2017 and will be mailed to a randomized group of patients and caregivers in the IDF community. The results from our previous National Patient Surveys, conducted in 1996, 2002, 2007 and 2012, have dramatically helped patients, families, healthcare providers and policy-makers to better understand PI.

Laura Oberkfell Shares Her Story

Laura Oberkfell is a member of the PI community and wanted to share her story.

“We are fine, we are blessed, we are incredibly lucky...this is what I tell myself and others as we continue our unexpected journey. Lives do not go as planned, and that is okay. You live, love and learn a lot. I've been inspired to share a bit of our story as both of our boys have a primary immunodeficiency (PI) and Food Protein Induced Enterocolitis (FPIES).

Statement from Horizon Pharma Regarding Hurricane Harvey

Statement from Horizon Pharma Regarding Hurricane Harvey

At Horizon Pharma, our thoughts continue to be with the people of southeast Texas who are facing devastation caused by Hurricane Harvey. While we work with partners to provide support for the Texas community, we want to ensure that those impacted who are living with urea cycle disorders (UCDs), chronic granulomatous disease (CGD) or nephropathic cystinosis are aware of the following resources.


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