Skip to main content

EDS Wisconsin Network to Provide Health Data Management Tool to Community Members

Backpack Health platform empowers Ehlers-Danlos syndromes community with enhanced data access and ownership

Sun Prairie, WI and Dover, MA – January 3, 2019 – EDS Wisconsin, Inc. has partnered with Backpack Health, LLC to offer a free health data management platform to individuals, families, and caregivers in the Ehlers-Danlos syndromes (EDS) and related conditions community. Backpack Health will provide the EDS community with an easy way to centralize and consolidate the complex and detailed health data in a secure, portable, multilingual format.

“EDS Wisconsin is thrilled to offer our community Backpack Health’s critical health management tool,” said Tammy Kosbab, president and co-founder of EDS Wisconsin, Inc. “Patients with EDS and related conditions face many challenges in managing their health, including accessing and sharing medical information. Backpack Health is empowering our community members to advocate for better care and enabling our members to actively pursue their lives with greater peace of mind, knowing that they have their health data with them at all times, online and offline, in any circumstance.”

Ehlers-Danlos syndromes affect the body’s connective tissue, resulting in numerous complications. The genetic nature of these syndromes means that multiple family members will often have the syndrome, with symptoms manifesting differently for each person. Oftentimes these patients have large medical teams, treatment plans, data, and appointments to track.

“For patients with rare and chronic diseases, it is so important to have complete control and access to medical information,” said Jim Cavan, President and CEO of Backpack Health. “Our partnerships with rare disease communities, including both the Wisconsin and Georgia EDS networks, have allowed patients and their family members to manage their health more effectively. For the EDS community, where multiple family members are often affected, this is especially important for caregivers.”

In addition to offering a health management tool to the Wisconsin EDS community, Backpack Health and EDS Wisconsin are also building a patient registry for those affected by EDS and related disorders, leveraging de-identified, aggregated data to perform studies that advance clinical research. Upon their consent, individuals with EDS and related disorders using Backpack Health will have their data de-identified and entered into the registry.

Backpack Health also provides access to a unique approach in emergency preparedness. By linking medical ID bracelets with their Backpack Health profiles, those with EDS can easily provide emergency responders with essential information about their condition, ensuring that they receive the right care in an emergency situation.

About EDS Wisconsin Inc.

EDS Wisconsin, Inc., provides support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos syndromes and related conditions via education and research. EDS Wisconsin envisions a better Wisconsin where EDS and related conditions are fully understood, treated and supported. Learn more and get involved https://edswi.org/.

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.