FLOWER is a study for people with rare diseases, aiming to gather and study their medical data. A rare disease affects fewer than 200,000 people in the U.S. This study is entirely virtual, meaning you can take part from home. You will need to provide electronic consent, which is your permission to join the study, and allow access to your medical records. The study collects data from different places like hospitals and labs. They use technology to organize and understand the information. This includes data types like CCDA (Consolidated Clinical Document Architecture) and FHIR (Fast Healthcare Interoperability Resources), which are formats for electronic health information. The study also uses special computer programs to help analyze the data. It lasts for a long time to see how rare diseases change over time. You can join if you have a rare disease, and your family can help if needed. The study doesn't need you to fill out forms, and there's no need to visit any research centers.

• Participation is virtual: Join from home without traveling.
• No data entry required: Study staff manage the data.
• Long-term study: Tracks disease progression over time.