Solutions

What We Provide

Our Solution: Empowering the EDS Community

We simplify access to the most credible information, giving patients, caregivers, and providers the tools to make informed decisions for better care. If you’re here, you’ve likely experienced the frustration of navigating scattered resources about hypermobility disorders. While some great nonprofits, news organizations, and patient-created content exist, no single hub has centralized this knowledge—until now.

A Joint Effort: Built for the Community, by the Community

We’ve united experts, patients, and advocates to build a comprehensive resource hub tailored to those navigating the complex diagnostic journey of Ehlers-Danlos syndrome (EDS). This growing library is designed to support those who are often left to research their own condition when the medical system falls short. Together, we’re closing the gaps and creating a one-stop solution for the EDS community.

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The people we serve 

Patients/Caregivers

Feeling lost trying to learn about your invisible condition? Dismissed, disbelieved or worse? Or still seeking an official diagnosis of EDS? The diagnostic journey is elusive. We've got guides and resources to assist you on your journey. 

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Providers

Feeling left-behind in the medical community with no Ehlers-Danlos syndrome or hypermobile awareness? Connect to training and CEUs to get up-to-speed fast from experts leading the field from the research bench to the bedside. 

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Patient Advocates

Need a network with extensive resources to support your EDS family of clients you support? Stay informed, access the latest research plus tools to operationalize and market your independent advocacy business. When you're ready to take the volunteering to the next level. 

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Our solutions encompass a level of unmatched collaborative content
build by the community for the community

Comprehensive Content Tailored for the EDS Community

The EDS Joint Effort hub offers a wide range of carefully curated resources to support patients, caregivers, and providers. Our content is designed to address the unique challenges of living with and managing Ehlers-Danlos syndrome and its related conditions. Whether you're seeking educational materials, actionable advice, or emotional support, our growing library provides reliable, up-to-date information in various formats to meet your needs.

Types of Content We Provide

Our mission is to make knowledge accessible and empower the EDS community with tools to take control of their health and care journey.

Educational Guides: In-depth articles on EDS, hypermobility, and related conditions like POTS, MCAS, and Chiari malformations.
Research Insights & Summaries: Easy-to-digest overviews of the latest studies and medical advancements.
Practical Tools: Symptom trackers, care planning templates, and checklists for appointments.
Patient Stories: Real experiences from the community to inspire and validate your journey.
Expert Insights: Videos, interviews, and Q&A sessions with medical professionals and researchers.
Advocacy Resources: Templates, tips, and guides for self-advocacy and legislative engagement.

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    The EDS Joint Effort is the definitive platform for all things Ehlers-Danlos Syndrome (EDS) and related conditions. This expansive repository offers an array of resources, from the latest research to practical guides, all easily searchable living library through our intuitive companion tool. Designed by patients for patients, with contributions from expert providers, and patient advocates, Joint Effort facilitates a seamless exchange of knowledge and support. By connecting insights and empowering our community, we enhance understanding and drive advocacy. We believe through collaboration and sharing information is how we will get through this, together.

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      The information provided by EDS S.H.A.R.E. and EDS Joint Effort is not medical advice. It is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding any medical condition. EDS Joint Effort, its producers, and its contents are not liable for any actions taken based on the information provided, and all users agree to hold harmless EDS Joint Effort and all products, producers from any claims arising from the use of the information provided. This information is not designed to replace a physician’s independent judgment about the appropriateness or risks for a given patient. Always consult your doctor about your medical conditions. EDS S.H.A.R.E. does not provide medical advice, diagnosis or treatment. Use of the site is conditional upon your acceptance of our Terms of Use and Privacy Policy as stated.

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