Skip to main content

Georgia Ehlers-Danlos Syndrome (EDS) Network to Provide Comprehensive Health Information Management Tool to Community Members

Backpack Health to strengthen Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders communities with enhanced data access and ownership

Decatur, GA – December 10, 2018 – The Georgia Ehlers-Danlos Syndrome (EDS) Network has partnered with Backpack Health, LLC to provide a free tool to help individuals, families, and caregivers in the EDS community manage their medical information. With a focus on helping those with complex, rare and chronic conditions, the platform will give EDS community members an easy way to consolidate the details of their health in a secure, portable, multilingual format.

“Working with Backpack Health, we can support our members by making medical information portable and shareable, a major challenge our community members face daily,” said Melissa Dickinson, founder of the Georgia Ehlers-Danlos Syndrome Network. “Using this powerful data platform, we can also co-direct meaningful research for Ehlers-Danlos Syndromes and related disorders, and we will have a chance to play an active role in the prevention of death and disability for those of us living with EDS. This participation will be a step forward in creating best practices and identifying care trends for the future.”

People with EDS, vascular EDS, and other related and often life-threatening disorders that affect the body’s connective tissue require ongoing care from multiple medical specialists. The complexity of medical management is compounded because there are, in many cases, several family members with the diagnosis – often seeing different physician teams.

“We understand the challenges of managing rare and chronic illnesses, including EDS,” said Jim Cavan, President and CEO of Backpack Health. “We’ve seen our platform become an invaluable tool to these patient communities. With the EDS community, several family members will often carry the diagnosis. We enable the management of each family member’s health information on one central platform, putting the power back in the hands of EDS patients and caregivers to take charge of their healthcare information.”

Backpack Health and the Georgia EDS Network are building a patient registry for EDS and related disorders, leveraging de-identified, aggregated data to perform studies that advance the understanding of these rare disorders. Upon their consent, individuals with EDS and related disorders using Backpack Health will have their data de-identified and entered into the registry.

Individuals using Backpack Health will also have access to a unique approach to emergency preparedness. By linking medical ID bracelets with their Backpack Health profile, emergency responders can securely access essential information about EDS and related disorders, helping to get those individuals the care they need.

Access to the Georgia EDS Support Network within the Backpack Health app will be available in the coming weeks.

About Ehlers-Danlos Syndromes and the Georgia EDS Support Network

The Georgia EDS Support Network is an intentional community designed to equip persons in Georgia living with or attempting to confirm a diagnosis of one of the Ehlers-Danlos Syndromes or Hypermobility Syndromes (and their families/caregivers) with information and resources to improve healthcare outcomes and quality of life. It is our mission to create and maintain a strong connected community of compassionate and intelligent support so that our members can live and thrive. Learn more and get involved at www.chronicpainpartners.com/north-atlanta-eds-support-group/.

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.