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 disorders 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. The basic app is always free; the Foundation has made the PRO version also free for those with Marfan and many of the related disorders who join the Foundation’s group.

And that’s not all. In conjunction with the app, we are launching the first-ever Marfan and Related Disorders International Patient Registry, which leverages the power of de-identified, aggregated data to perform studies to advance the understanding of Marfan syndrome and related disorders. Upon their consent, individuals with Marfan and related disorders who are using Backpack Health PRO 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. In addition, you can register now for our webinar on Tuesday, June 19, at 4 pm Eastern Time, to learn more about the app and how to use. We will send registration information by the end of the month.

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