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We know it is challenging to manage your healthcare records when you have a complex, multi-system condition like Marfan syndrome and the related disorders. That’s why we are thrilled to announce that, starting today, we are making a new dynamic and secure personal health records tool available to our Marfan and related conditions community free of charge through Backpack Health.

The app works on any device to make information manageable, shareable, portable, and even translatable. It was designed specifically for those living with complex, rare, and chronic conditions. 

And that’s not all. In conjunction with the app, we are launching the first-ever Marfan and Related Conditions International Patient Registry, which leverages the power of de-identified, aggregated data to perform studies to advance the understanding of Marfan syndrome and related conditions. Upon their consent, individuals with Marfan and related conditions who are using Backpack Health can have their data de-identified and entered into the registry.

To subscribe, visit join.backpackhealth.com/MarfanRelatedDisordersRegistry on a desktop or mobile device. After that, the app can be downloaded to any Apple or Android smartphone.

For more information, please visit our website. 

Please know we are always here for you and are committed to finding new innovative ways to help you live successfully with your diagnosis.