EDS, Hypermobility Disorders & Related Conditions

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EDS Wellness + Backpack Health

Join EDS Wellness’ Backpack Health Community and International Patient Health & Wellness Registry TODAY!


Thanks to a partnership with Backpack Health, EDS Wellness 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 EDS, hypermobility disorders & related conditions 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. 

People in the broader Ehlers-Danlos syndromes & hypermobility disorders community often require care from multiple medical providers, which can become daunting in families where multiple members are affected. 

Through a unique partnership between EDS Wellness and Backpack Health, LLC, the Ehlers-Danlos syndromes & related conditions community can download the Backpack Health app at no charge. This app offers people with EDS, hypermobility disorders & related conditions, such as heritable connective tissue disorders, inflammatory connective tissue diseases, 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.

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 EDS Wellness’ Backpack International Patient Health & Wellness Registry to share cards with us and get notified of new research study opportunities.

  2. Take part in periodic surveys on symptoms related to hypermobility disorders, EDS & related conditions, 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 all hypermobility disorders, such as EDS & related conditions and improved diagnosis and treatment.

Press Release

 EDS Wellness – Backpack Health News Release PDF

 
 

Who is this for?

 

Members of this register have confirmed or suspected diagnosis of one of the following conditions: Ehlers-Danlos syndromes, hypermobility-related disorders, including other heritable connective tissue disorders, connective tissue diseases, and associated conditions, such as inflammatory and autoimmune conditions, Mast Cell Activation Syndrome (MCAS) and POTS/Dysautonomia.

About Backpack Health Communities

Backpack Health is a unique tool that helps you keep track of all of your health info so that it’s portable, manageable, shareable, and translatable. And, by being connected to various groups or organizations through Backpack Health, you’ll also have the opportunity to help make a difference.

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Join Our Mission To Restore Function & Live Well!

EDS Wellness is a 501(c)(3) nonprofit located in the state of Maryland, USA. We are a global public health and wellness-minded charitable organization focused on integrative & research-based SOLUTIONS, and mind-body-spirit care for individuals with all hypermobility related disordersAbout Us. Contact. Privacy. Tax ID/EIN: 81-1592109

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