People with Marfan syndrome and related disorders require ongoing care from multiple medical specialists for their entire life. The complexity of medical management is compounded because, in many instances, there are several members of the family who have the diagnosis.
Through a unique partnership between The Marfan Foundation and Backpack Health, LLC, the Marfan and related disorders community can download the Backpack Health PRO app at no charge. This app offers people with Marfan and related disorders – and their families – an easy and secure way to manage their healthcare records. The app was designed specifically for those living with complex, rare, and chronic conditions.
Features of Backpack Health PRO include:
- Patient and Caregiver Support: Users can add information and invite others to co-manage profiles and collaborate using the app to stay on top of care decisions.
- Health Tracking and Multimedia Data Storage: Users can monitor and record vital health information, using images, videos, and audio files to track changes over time.
- Health Share Cards: The app offers a tool that allows patients and caregivers to excerpt selected health details to be securely shared via pdf, text, or email, for example, with a new doctor, school nurse, or other family member.
- Easy Translations: Translate health information into English, Spanish, German, Italian, and French and convey critical information instantly, even without an internet connection.
To access the app and subscribe, visit join.backpackhealth.com/MarfanRelatedDisordersRegistry on a desktop or mobile device. After that, the app can be downloaded to any smartphone.
Through Backpack Health PRO, people with Marfan and related disorders can also participate in the Marfan and Related Disorders International Patient Registry. This is the first-ever registry that aggregates de-identified medical information from people with these conditions for the use of research. Click here to learn more about how you can participate.
If you have any questions about Backpack Health PRO, please see The Marfan Blog.