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Backpack Health and Ehlers-Danlos Society (EDS) Partner to Ease Patient Journeys for Global Community with Proprietary Health Data Management Platform

Data gathered from de-identified patient registry furthers research on Ehlers-Danlos and hypermobility spectrum disorders

Dover, MA – July 2, 2019 – The Ehlers-Danlos Society (EDS) has partnered with Backpack Health, LLC to provide community members living with chronic and rare diseases continuous access to their health records via its mobile and web-based multi-lingual digital health data management platform.

“There remains a gap in research and understanding of Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions that can occur, which leads to treatment mismanagement and mistakes,” said Lara Bloom, International Executive Director of the Ehlers-Danlos Society. “To further research and support our members, we are thrilled to partner with Backpack Health, a global leader in secure data health management and research. By offering its digital platform to our community, we are not only empowering users to take control of their medical information, but we are enabling them to contribute to medical research by joining the EDS and HSD Global registry via this platform. Using patient-reported information to populate shared experiences, we can further support our members by sharing insights on treatments and services with members and their health care teams.”

Ehlers-Danlos syndromes are a group of disorders that impact connective tissue in the body and can lead to multisystemic issues. They are thought toaffect at least one in 5,000 individuals worldwide. As a genetic disease, Ehlers-Danlos can often affect multiple family members, impacting each member differently, placing a significant care management toll on patients and their care givers.

To help ease on-the-go stresses for patients with rare and chronic diseases, the Backpack Health platform has an emergency feature that allows users to link their Backpack Health profile to a medical ID bracelet. Should an emergency arise, responders and clinicians can safely treat the individual by accessing their full Backpack Health medical record using their medical ID link, to inform treatment protocol.

“Often times individuals living with rare and chronic diseases require large medical teams, extensive treatment plans and health monitoring throughout their health journey, generating an overwhelming amount of data for patients and their care providers to manage,” said Jim Cavan, President and CEO of Backpack Health. “Recognizing these challenges, we are committed to easing the medical journey for those living with Ehlers-Danlos and hypermobility spectrum disorders by centralizing and consolidating intricate and detailed health information so users can feel secure knowing that they always have their full and updated medical records on hand in a time of need.”

About Ehlers-Danlos Society

The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals and supporters dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders Headquartered in Baltimore, Maryland, The Ehlers-Danlos Society is a registered 501c3 nonprofit organization in the United States and a registered charity in the United Kingdom.

About Backpack Health

Backpack Health, LLC builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain 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. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at