The National Organization for Rare Disorders (NORD®) has launched the IAMRARE® mobile app, enhancing access for patients and caregivers to participate in rare disease research. This companion app, available on Apple’s App Store and Google Play, connects users to the IAMRARE Registry Platform, which facilitates essential natural history studies involving over 20,000 participants across 165 rare diseases. With around 95% of known rare diseases lacking treatments, the app aims to expedite data collection and improve the quality of research, ultimately leading to faster clinical trials and approved therapies. NORD’s CEO, Pamela K. Gavin, emphasizes that this tool empowers patients as partners in the research process. Since its establishment in 2014, IAMRARE has contributed to over 30 peer-reviewed publications and one approved therapy. For more information and to download the IAMRARE app, visit iamrare.org.
Learn more about NORD’s initiatives at https://rarediseases.org/.
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