Get Real Health Launches New Mobile App for Immune Deficiency Foundation Patient Community

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New Mobile App Allows Unprecedented Tracking of Critical Health Data for People Living with Primary Immunodeficiency Diseases

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IDF is one of the most active and engaged organizations we’ve worked with. They are fully committed to helping their community more easily manage their diseases and we’re proud to help them do that.

The Immune Deficiency Foundation (IDF) launched a new mobile app to further enhance the experience for its patient community using its IDF ePHR, an electronic personal health record powered by Get Real Health’s InstantPHR®. The app allows patients with primary immunodeficiency diseases (PI) to easily track their health information, including symptoms, diagnoses, medications, infusions and other critical health data. IDF announced the release of the app to more than 1,300 attendees at the IDF 2015 National Conference in New Orleans, June 26.

IDF rolled out a desktop and mobile web version of IDF ePHR last fall and is now used by over 1,600 users. With the launch of the mobile app, patients will now be able to manage their health on-the-go by tracking goals, setting reminders and notifications in addition to viewing their info and keeping track of all their health conditions through easy-to-read charts and graphs. The national non-profit is the first organization to utilize the InstantPHR mobile app.

“We are extremely excited to announce that the IDF ePHR now has an app,” said Marcia Boyle, IDF President & Founder. “People living with primary immunodeficiency tend to have extensive health records. By building on our legacy of utilizing innovative technology to help patients, the IDF ePHR app now gives our community a simple, secure way to keep their health information organized and always accessible on a smartphone or tablet.”

Get Real Health customized many components of IDF ePHR to make it user-friendly and relevant for this unique patient population. Approximately 250,000 people in the United States live with primary immunodeficiency diseases. These diseases can vary widely in their symptoms and treatments, thus IDF needed a patient portal that was flexible and entirely patient-centered. InstantPHR® met those requirements. The addition of infusion logs was particularly critical for PI patients, so Get Real Health customized a feature that allows them to track their infusions on a regular basis, either by date, product or lot number. Additionally, patients can easily log their daily records through a newly built calendar feature as well as track side effects and allergies.

One unique feature of IDF ePHR is that it is connected to the IDF Patient-Powered Research Network, PI CONNECT, which allows consenting patients to share anonymous data with the United States Immunodeficiency Network (USIDNET) for research. The long-term goal of PI CONNECT is to boost the efficiency of research and shift away from investigator studies to patient-centered studies, where patient experience is the driver toward change.

“IDF is one of the most active and engaged organizations we’ve worked with,” said Robin Wiener, President and Founder of Get Real Health. “They are fully committed to helping their community more easily manage their diseases and we’re proud to help them do that.”

About Get Real Health
Rockville, Maryland-based Get Real Health specializes in providing an untethered PHR solution at a system-wide level to healthcare organizations, non-profits and governments around the world. Our award-winning product — InstantPHR® — is a bidirectional data sharing patient engagement platform with tools that empower patients to be an active part of their care team. We help organizations meet both current and future needs such as chronic disease management, mobile strategies, remote patient monitoring, wellness, as well as Meaningful Use 1, 2, 3 and beyond. Get Real Health has strategic partnerships with industry leaders including TELUS Health Solutions, Capgemini, Caradigm, Telstra Health, Microsoft, Tribridge, and HumanAPI. Visit: or watch a two-minute video at to learn more.

About the Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases (PI) through advocacy, education and research. There are approximately 250,000 people who are diagnosed with a PI in the U.S. These individuals often find it difficult to receive specialized healthcare, proper diagnosis and treatment. Individuals affected by PI also experience difficulties financing their healthcare, finding educational materials on the disease and locating others with whom to share their experiences. IDF helps these individuals overcome these difficulties and live a healthy and productive life. The constant presence of IDF assures patients, their families and their medical caretakers that there is a place to turn for help. To learn more about IDF, visit

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Kathleen Silverstein
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