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No-Cost Digital Health Info Tool Made Available to Marfan Syndrome and Related Disorders Communities

Unique Tech Platform from Backpack Health Offers First-Ever Mobile App Customized for Marfan and Related Disorders

Port Washington, NY – May 17, 2018 – The Marfan Foundation announced today that it made arrangements for a new cloud-based secure app available now for free to people with Marfan and related disorders – and their families – to uniquely manage their medical records.

The app, developed by Backpack Health, LLC, offers easy access to a secure personal health records tool that works across all device platforms and makes health information manageable, shareable, portable and even translatable. The app was designed specifically for people with complex, rare, and chronic conditions who need frequent access to their health records. The basic app is always free; a for-charge PRO version will also be available at no charge for people with Marfan and related disorders who join the Foundation’s group in Backpack Health.

“It is difficult for families in our community to organize their medical records, track healthcare needs, and keep communications seamless among the countless doctors needed to manage their condition,” said Michael Weamer, President and CEO, The Marfan Foundation. “This partnership with Backpack Health enables our community to have a seat at the table when it comes to talking about their health and tracking their personal health records so that they can better navigate their complicated medical journey.”

“Living with Marfan syndrome requires working with many specialists and, oftentimes, traveling among multiple hospitals to find skilled care. Having records transferred from one doctor to another is a huge pain,” said Maya Brown-Zimmerman, who was diagnosed with Marfan syndrome as a child. “Using the Backpack Health PRO app means that I don't have to do that anymore. I am better able to manage my health and share information with all of my providers.”

People with Marfan syndrome, a life-threatening genetic disorder that affects the body’s connective tissue, and those with related conditions, require ongoing care from multiple medical specialists. The complexity of medical management is compounded because, in many instances, there are several members of the family who have the diagnosis – often seeing different physician teams.

“There are many hurdles people experience when trying to keep track of their health and manage complex, chronic conditions. This partnership with The Marfan Foundation will provide a new level of support for those who need it most, speed access to care and reduce the need for repeat testing when visiting various physicians,” said Jim Cavan, Founder and CEO of Backpack Health.

Along with access to the PRO app, Backpack Health and The Marfan Foundation are launching the first-ever Marfan and Related Disorders International Patient Registry leveraging de-identified, aggregated data to perform studies that advance understanding of Marfan syndrome and related disorders. Upon their consent, individuals with Marfan and related disorders using Backpack Health PRO will have their data de-identified and entered into the registry. This participation will be a step forward in creating best practices and identifying care trends.

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

Marfan Syndrome and The Marfan Foundation

Marfan syndrome and related connective tissue disorders affect approximately 200,000 people in the U.S. Marfan syndrome is a life-threatening genetic disorder of the body's connective tissue. It affects the heart and blood vessels, the bones, and the eyes. Knowing the signs is the key to early and accurate diagnosis and life-saving treatment.

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. It works tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness. Learn more and get involved at www.marfan.org.

Backpack Health

Backpack Health, LLC, which is based in the Greater Boston area, builds innovative tools to help people better manage their health. The Backpack Health mission is to make it easy for everyone to access, own and control all their health information to support better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. Learn more at www.backpackhealth.com