#United States #Rare Diseases #Danbury #NORD #IAMRARE

NORD Launches Innovative IAMRARE Mobile App

The National Organization for Rare Disorders (NORD) has officially unveiled its IAMRARE mobile app, designed to enhance connectivity for patients and caregivers involved in rare disease research. This robust and accessible mobile companion is perfectly synchronized with the IAMRARE Registry Platform, enabling a seamless experience for over 30 million Americans living with rare diseases.

A Game-Changer in Rare Disease Research

In an era where rapid advancements in medical science are imperative, the IAMRARE mobile app stands out as a transformative tool. Patients and caregivers will now find it easier to engage in clinical studies and contribute vital information that propels research forward. Currently, around 95% of the known 10,000 rare diseases lack approved treatments, making scientific breakthroughs critical.

Pamela K. Gavin, NORD's CEO, hailed the mobile app as a revolutionary step in the fight against rare diseases. She emphasized that by streamlining the collection of patient data, researchers can proceed with studies more efficiently, ultimately leading to faster discoveries and therapies.

Enhanced Connectivity and User Experience

The mobile app's integration with the IAMRARE system is designed for user convenience. By utilizing the same login credentials, users can instantly connect to the rare disease studies they are participating in. Given that over half of the users access the IAMRARE platform via mobile devices, the app is tailored to ensure quick access, easier navigation, and helpful reminders for upcoming tasks and deadlines.

The IAMRARE initiative, supported by input from the FDA and medical professionals, has established itself as an important player since its inception in 2014. More than 70 patient-powered studies have been developed, encompassing over 20,000 participants with 165 different rare diseases. The data gathered through IAMRARE has been referenced in over 30 peer-reviewed publications and has significantly contributed to the approval of a new therapy.

Empowering Patients and Caregivers

The IAMRARE mobile app not only fosters collaboration but also emphasizes the importance of patient experiences in shaping research. Through the platform, patients are not just subjects but partners in their healthcare journey, from initiating studies to co-designing research methodologies and owning data. This empowerment has far-reaching implications, potentially inspiring new treatment strategies and better patient outcomes.

For those looking to get involved or learn more about IAMRARE, resources are readily available at iamrare.org. The app can be conveniently downloaded from both the Apple App Store and Google Play, allowing seamless access to critical health information anytime, anywhere.

About NORD

Founded in 1983, the National Organization for Rare Disorders (NORD) is a distinguished nonprofit entity dedicated to advancing the health and lives of individuals affected by rare diseases. Through collaboration with over 350 member patient organizations, NORD continues to champion research, policy initiatives, and enhanced care for those navigating the complexities of rare illnesses. To discover more about their journey and impacts, visit rarediseases.org.