Join the DSN Backpack Health Community and Registry Today, via Backpack Health!

Thanks to a partnership with Backpack Health, the Dysautonomia Support Network is now able to offer members and their caregivers a centralized, cloud-based mobile app that can store, organize, track and share vital health information. Plus, group members have the ability to easily participate in dysautonomia research studies. Backpack Health's powerful digital medical record keeping and research sharing app offers language translation, secure sharing abilities, plus the unique ability to take part in customized surveys. 

Through a unique partnership between The Dysautonomia Support Network and Backpack Health, LLC, the Dysautonomia and related disorders community can download the Backpack Health app at no charge. This app offers people with Dysautonomia and related disorders, such as connective tissue disorders, Gastroparesis, Mast Cell Activation Disorder, and Chiari malformation, a secure way to manage their healthcare records. The app was designed specifically for those living with complex, rare, and chronic conditions.

 

People with dysautonomia and connective tissue disorders often require care from multiple medical providers, which can become daunting in families where multiple members are affected. Backpack Health helps you digitally manage your family medical records, securely translate and share that information with providers or family members, as well as take part in ongoing research studies and patient surveys, should you chose to opt-in your data is de-identified.

Securely Upload and Share Information:

  1. Upload up to 50GB of documents, images, videos and audio files.

  2. Get your own secure links (URLs) for up-to-date sharing.

  3. Extract specific details from profiles to build Share Cards - easily converted to PDF and shared via text, email or secure URL.

  4. Give others live access to your Emergency Share Card, or another Share Card, by adding the URL to your medical bracelet or your phone's medical ID.

 

Manage and Translate Medical Records:

  1. Monitor and record health information using images, videos and audio files to track changes through time.

  2. Translate your medical information into English, Spanish, French, Portuguese, Italian and German.

  3. Access your information from anywhere, even without an internet connection.

  4. Invite other caregivers to co-manage profiles and collaborate on care.

Take Part in Anonymous, Crowdshare Surveys and Research Studies:

  1. Join the DSN Backpack Community and Patient Registry to share cards with us and get notice of new research study opportunities.

  2. Take part in periodic surveys on Dysautonomia symptoms, treatments and quality of life to make your voice heard.

  3. Share your own Patient Reported Outcome – without clinical interpretation. This information is critical in assessing and improving treatments over time.

  4. Consent to have data de-identified and made accessible to researchers, who can analyze the anonymous data, leading to an increased understanding of Dysautonomia and improved diagnosis and treatment.

 

Press Release

Testimonials

“We are excited to offer this robust mobile app to assist patients in storing medical records and medication information so that they can have the information available at their fingertips.”

Amanda Aikulola, President and CEO of the Dysautonomia Support Network

"I love the share card feature!!!"

Kaden Johnson, DSN member