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The Dysautonomia Support Network Offers Backpack Health to Members for Easy Management of Health Data and Treatment Information

Partnership leads to creation of First-Ever International Patient Registry Customized for Dysautonomia and Related Disorders

Johnston, RI and Dover, MA – January 7, 2019 – The Dysautonomia Support Network today announced that it will provide Backpack Health’s mobile health data management platform, an empowerment tool for those living with complex, rare, and chronic conditions, to its members living with dysautonomia. Backpack Health’s platform allows users to securely manage their own personal health records on any device to make information manageable, shareable, portable, and even translatable to multiple languages.

“We are excited to offer this robust mobile app to assist patients in storing medical records and medication information so that they can have the information available at their fingertips,” said Amanda Aikulola, President and CEO of the Dysautonomia Support Network. “We are thrilled to partner with Backpack Health to offer our community all the features that the platform offers to help them navigate their complicated medical journeys.”

Dysautonomia is a spectrum of neurological disorders causing abnormal functioning of the autonomic nervous system. Over 70 million people in the world live with one or more forms of dysautonomia. Many living with Dysautonomia have a connective tissue disorder, such as Ehlers-Danlos Syndrome, or other underlying or related conditions. Managing multiple chronic illnesses commonly involves several medications, treatment plans, and many medical providers, creating a challenge of coordination and care team alignment. Backpack Health’s tool allows patients and their caregivers to easily manage records, track and document symptoms, medications and more, ensuring that large care teams remain on the same page to provide the best care.

In conjunction with Backpack Health’s data management platform, the two organizations are launching the first-ever International Patient Registry on dysautonomia and related disorders, which leverages the power of de-identified, aggregated data to study and advance the understanding of the various types of dysautonomia and related disorders. Upon patients’ consent, individuals using Backpack Health as part of the Dysautonomia Support Network will have their data de-identified and entered into the registry.

“Dysautonomia affects children, teens, and adults, and there is currently no cure. However, ongoing research is offering a better understanding of the disease,” said Jim Cavan, CEO and Founder of Backpack Health. “We enter this partnership knowing that we can help ease the burden of patients and their caregivers managing this complex condition, and with the hope that the data captured in our Backpack Health Dysautonomia community will lead to identifying trends, potential treatments, and advancing research.”

About The Dysautonomia Support Network

The Dysautonomia Support Network is a U.S. based, 501 (C) (3) non-profit organization. Its mission is to provide support, resources, education, and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders. By working with other non-profit organizations, we aspire to increase the scientific understanding of the relationship between dysautonomia, autoimmune disorders, connective tissue disorders Mast Cell disorders, and gastric motility disorders, in the hope of finding new treatment options for patients with these clusters of conditions. Learn more at

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