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The National Adrenal Diseases Foundation to Empower Patients with Backpack Health’s Data Management Platform

Partnership will allow patients to better manage their health and contribute to the advancement of Adrenal Diseases research

Lake Zurich, IL, and Dover, MA – February 11, 2019 – The National Adrenal Diseases Foundation and Backpack Health today announced a partnership offering the adrenal disease community Backpack’s health data management platform, allowing for full access and control of health information for patients and, with patient consent, collection of adrenal disease-specific patient-reported data. The mobile tool enables patients to store personal health records securely, with the ability to translate, share and transport all data on any device.

“Backpack Health’s platform allows us to offer better support to the adrenal disease community,” said Kalina Warren, President of the National Adrenal Diseases Foundation. “With the expansive platform, adrenal disease patients will have the tools to navigate and manage their disease and be empowered to take control of their health. We are excited to offer Backpack Health to the community and contribute to research of adrenal disease.”

Adrenal glands are small glands located at the top of each kidney. These glands produce essential hormones that one can’t live without. Adrenal gland-related diseases are caused by the glands being either over productive or under productive. Primary Adrenal Insufficiency, including Addison’s Disease and Congenital Adrenal Hyperplasia (CAH), is a rare disease caused by the insufficient, or complete lack, of cortisol and aldosterone hormone production. Underproduction of cortisol can be also caused by the absence of the normal stimulation to the adrenal cortex from a lack of adrenocorticotropic hormone (ACTH). This can occur when the pituitary gland does not produce ACTH. This condition is named a Secondary Adrenal Insufficiency.

Backpack Health and the National Adrenal Diseases Foundation are also partnering to develop a survey for patients to collect de-identified, aggregated data. Upon patients’ consent, individuals using Backpack Health as part of the National Adrenal Diseases Foundation will have their data de-identified (i.e., no personally identifiable information is shared) and entered into the registry to advance research and understanding of adrenal disease.

“We are thrilled to partner with the National Adrenal Diseases Foundation and extend our support to this rare disease community, helping to ease the burden of patients and their caregivers managing these complex diseases,” said Jim Cavan, CEO and Founder of Backpack Health. “We hope that the data captured by this partnership will advance research and lead to treatment and cures.” Kalina Warren, NADF President, echoes Jim’s sentiment, explaining “the small number of adrenal disease patients makes it difficult for the medical community to collect information that can be used to help them understand patient outcomes to improve quality of care.”

About National Adrenal Diseases Foundation

The National Addison’s Disease Foundation was formed in 1985 by a young couple as a result of their experiences with Addison’s disease. At that time, there was no organization established which would provide guidance and information about what life was like living with adrenal insufficiency. There was no way to contact others who shared this illness. Although Addison’s disease is considered a rare disease, it is estimated that at least 10,000 individuals in the United States have this condition (this is probably an underestimation). Incorporated in New York State in 1985, the name was later changed to National Adrenal Diseases Foundation to include individuals suffering from related diseases, such as Congenital Adrenal Hyperplasia. Support groups began forming in New Jersey, New York, Connecticut, Illinois. Currently, NADF has support groups in most States in addition to several virtual/specialty groups like the Inspire online Community, Spanish Speaking Adrenal Patients, Pregnancy and Female Reproduction, Young Adults, and others.

As a result of the dedication of the Board of Directors, officers and members of NADF, Addisonians now have a resource for their physical and mental health questions. The newly diagnosed can look to NADF for information from one of its “Facts You Need To Know” pamphlets. Anyone wishing to correspond with a fellow Addisonian or find understanding through participation in a support group need look no further than NADF. Even endocrinologists can stay informed through the efforts of the foundation.

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 www.backpackhealth.com.