Rare Daily Staff

The Georgia Ehlers-Danlos Syndrome Network has partnered with Backpack Health to provide a free tool to help individuals, families, and caregivers in the EDS community manage their medical information.

The Ehlers Danlos Syndromes (EDS) are a group of heritable connective tissue disorders generally characterized by poor wound healing, hypermobile joints, and soft velvety skin. Symptoms and complications overlap a lot among the different types of EDS and even other connective tissue disorders.

People with EDS and other related 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.

The Backpack platform will allow people with complex, rare, and chronic conditions 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.”

Dickinson added that her organization’s participation will serve as a step forward in creating best practices and identifying care trends.

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.

“With the EDS community, several family members will often carry the diagnosis,” said Jim Cavan, president and CEO of Backpack Health. “We’ve seen our platform become an invaluable tool to these patient communities. 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.”

 

December 12, 2018
Photo: Melissa Dickinson, founder of the Georgia Ehlers-Danlos Syndrome Network

 

X