App Profile: NORD® IAMRARE®

Developed by the National Organization for Rare Disorders (NORD®), the IAMRARE® platform allows you to find and participate in available rare disease studies and registries. Whether you or your loved one has a rare disease, you can take surveys and contribute data that could help advance research. Built with patients and caregivers in mind, the IAMRARE platform allows you to:
• Transition between your computer and your mobile device
• Opt-in to receive survey notifications that appear right on your device
• Answer questions and upload selected health records
• Work at your own speed by saving your progress and returning later
• Review and save your responses to keep track of your health information
• View graphs and charts to better understand your rare disease community


The IAMRARE platform is secure and follows strict guidelines to ensure your data is protected. It supports English, Spanish, and French, with additional languages to come.