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Fabry Support & Information Group and Backpack Health Collaborate to Connect Patients with Resources, Research and Community

Backpack Health to expand resources for Fabry patients with robust health data management platform

Dover, MA – June 21, 2019 – The Fabry Support & Information Group and Backpack Health, LLC today announced a partnership, offering the Fabry community Backpack’s health data management platform, a cloud based mobile tool that enables patients to store personal health records securely on any device. The platform provides patients and their caregivers full access and control of their health information, with the ability to translate, share and transport all data on any device.

“We are thrilled to offer Backpack Health’s platform to the Fabry community, allowing us to provide the best support for our members,” said Jack Johnson, Executive Director and Founder of the Fabry Support & Information Group. “With Backpack Health, patients with Fabry disease can have their health information consolidated on one centralized platform, enabling the community to travel more confidently and easily share their health information with family, medical professionals and caregivers.”

Fabry disease, one of a group of conditions known as lysosomal storage diseases, is the result of a genetic mutation that interferes with deposits of a fatty substance called globotriaosylceramide in the walls of blood vessels and other organs throughout the body. The inherited disorder particularly affects vessels in the skin, kidneys, heart, brain and nervous system. It occurs in all ethnic groups, affecting one person in every 40,000, but may be more common.

Backpack Health also serves as a patient registry, offering patients the ability to participate in current research projects. With patient consent, Backpack Health de-identifies data to share with ongoing Fabry disease research. This critical patient-reported data serves to support the development of the latest treatment options.

“Backpack Health works to empower patients and their caregivers by providing a health management tool that gives patients control of their own health,” said Jim Cavan, President and CEO of Backpack Health. “Working with numerous rare disease communities, our platform overcomes many of the challenges faced by rare disease patients and has become a critical tool for patient communities. We are happy to extend our health management tool to the Fabry community so that they too can easily and securely track their health events multi-lingually and share it with those who care for them.

Backpack users can join by going to:

About Fabry Support & Information Group

Fabry Support & Information Group (FSIG) is a 501(c)(3) nonprofit organization. Our mission is to provide the Fabry Community and the general public with information, advocacy, education, and compassionate support to improve the quality of lives and the quality of care for Fabry patients and family members.

FSIG is a leading dedicated Fabry disease organization with over 20 years of service to the Fabry community. Services include education, emotional support through mutual self-help, medical expert referrals, advocating for patient community needs with stakeholders in the medical, pharmaceutical and regulatory communities to name a few.

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