Read a message from our Chief Medical Officer on the precautions you can take during the COVID-19 crisis to help #FlattenTheCurve:

Skip to main content

Key Duchenne Organizations Unite with Backpack Health to Support Patients with Health Data Management Platform

Patient Empowerment Tool to Provide Duchenne Community with the Ability to Store and Share all Health Information While Advancing Duchenne Research

Dover, MA – February 4, 2019 – MyDuchenne Backpack, a collaboration between Backpack Health, LLC and three key Duchenne muscular dystrophy organizations, is now offering the Duchenne community a patient empowerment tool to help better manage and control complex health data. Led by Harrison’s Fund with support from JB’s Keys to DMD and Little Hercules Foundation, the project provides patients with the ability to store personal health records securely on any device with the ability to translate, share and transport all data through Backpack Health’s platform.

“Our combined expertise in Duchenne together with Backpack Health’s expertise in health management for patients with rare and chronic diseases makes this critical health management tool all the more impactful,” expressed Alex Smith of MyDuchenne Backpack and Harrison’s Fund. “This partnership will not only transform the day-to-day lives of caregivers and patients with Duchenne, but also has the potential to fundamentally inform the future of research and treatments.”

Duchenne muscular dystrophy is a genetic disorder characterized by progressive muscle degeneration and weakness. The most common fatal genetic order to affect children around the world, the disease inhibits the body from producing dystrophin, the protein needed to build up muscles. Currently, there is no cure.

“As parents of children with Duchenne, we all know how important it is for ourselves and for researchers to gather the plethora of medical and anecdotal information that we store in folders, notebooks, Post-it notes, and even in our heads,” said Smith. “Our partnership with Backpack Health finally brings a tool that has been desperately needed to the Duchenne community.”

Backpack’s health platform also allows for the collection of de-identified, aggregated data to perform studies that advance clinical research. Upon their consent, individuals with Duchenne and related disorders using Backpack Health will have their data de-identified and entered into the registry.

“The strain of Duchenne touches many areas of the lives of those living with and caring for those with Duchenne,” said Jim Cavan, CEO and Founder of Backpack Health. “Our deep understanding of rare and complex diseases places us in a position to assist the Duchenne community. We are proud to be able to provide support by offering a tool that relieves the burden of carrying medical data, enabling patients and caregivers to communicate with medical professionals globally as well as track data patterns in a meaningful way.”

About MyDuchenne Backpack

MyDuchenne Backpack has partnered with Backpack Health to provide a customized experience for members of the Duchenne community who join the MyDuchenne Backpack group within Backpack Health. MyDuchenne is a tailored version of the Backpack Health app, making it easier for Duchenne patients and their families to create, own and control health data in a way that makes sense for them. Users are invited to join the international Duchenne e-community and reach the data they need in a way that is meaningful for their lives. Medical professionals and researchers alike can engage patients and access up-to-date data that is critical for improving treatment.

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