PORT WASHINGTON, N.Y., May 17, 2018 /PRNewswire/ -- 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.

Health IT Homepage