In participating in the followME Registry, not only are you a Pathfinder, you are also an ambassador for Fabry disease – thank you for being willing to share your journey. followME is a disease registry that will track the health of people living with Fabry disease over time. The goal is to evaluate how different types of disease management affect people living with Fabry. followME will gather and ultimately share data that can be used to support the broader Fabry Community. As part of the registry, you will be asked to fill out Patient Reported Outcomes (PRO) surveys using a secure website, smart phone or tablet. These systems are validated and secure, meaning that no one outside of the registry can access your data.
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