On-the-go app helps patients and caregivers share health information to support rare disease research
DANBURY, Conn., Oct. 28, 2025 /PRNewswire/ — The National Organization for Rare Disorders (NORD®), a leading national nonprofit serving more than 30 million Americans with rare diseases, has launched a mobile app to make participating in critical research studies even more accessible for patients and caregivers.
The mobile app, available from Apple’s App Store and Google Play, is a companion to the NORD IAMRARE® Registry Platform, which hosts multiple community-driven natural history studies and collects data on lived experiences that registry sponsors can share with researchers to advance new treatments. With approximately 95% of 10,000 known rare diseases lacking approved treatments, scientific breakthroughs are urgently needed.
“The IAMRARE mobile app is a game-changer,” said NORD Chief Executive Officer Pamela K. Gavin. “By making it easier for patients to participate and stay engaged, critical data can be collected faster and with higher quality. That means studies move forward more quickly, discoveries come sooner, and more approved therapies come to market.”
Using the same log-in credentials, this companion app immediately connects caregivers and patients to the IAMRARE Rare Disease study they have joined. More than half of patients and caregivers access the IAMRARE platform from their phones, so the IAMRARE mobile app has been designed to provide a speedier connection, simpler navigation, and helpful reminders.
NORD, with input from physicians and the U.S. Food & Drug Administration (FDA), established the IAMRARE data and research platform in 2014 to facilitate patient-powered natural history studies.
Since the program’s inception, more than 70 patient-powered natural history studies have been created or are in development, representing more than 20,000 participants and 165 rare diseases. IAMRARE data have been cited in more than 30 peer-reviewed publications and have contributed to one approved therapy.
IAMRARE empowers patients as partners throughout all phases of rare disease research, from study initiation and to co-design to implementation and data ownership. By harnessing the power of data and patient-reported experiences, IAMRARE studies are informing clinical trials, new treatment methods, and transformative change for the rare disease community.
Learn more about IAMRARE at iamrare.org.
Download the IAMRARE mobile app from the App Store and Google Play.
About the National Organization for Rare Disorders
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at https://rarediseases.org/.
SOURCE National Organization for Rare Disorders (NORD®)
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