• Add Videos
  • View All


  • Add Photos
  • View All

New Healthcare Management Tool Available - Secure and FREE

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 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.

Latest Activity

Profile Iconjohn pollacco, George, Cristina and 10 more joined Connect
42 minutes ago
Profile IconIf you are planning to register for the Annual Conference, please know that the fees will be increased after June 1st.
Nicole Underwood updated their profile
May 14
Sherron Wright shared Jennifer Buffone's group on Facebook
May 10


Doctor recommendations in Southern California? 2 Replies

Started by Lisa Walters in Uncategorized. Last reply by Lisa Walters Apr 6.

Is TGF β really the culprit? 4 Replies

Started by Chris in Uncategorized. Last reply by Noelle Charles Mar 27.

Marfans and pregnancy

Started by Brittany marler in Uncategorized Mar 27.



© 2018   Created by The Marfan Foundation.   Powered by

Badges  |  Report an Issue  |  Terms of Service