EDS Joint Effort: Our Story

We started as a band of fellow chronically ill patients who found a commonality in joint hypermobility and EDS of various types. We were all struggling to research our own diagnosis, and learn ideas for achieving a better quality of life despite chronic illness. We began sharing ideas on a support group forum. And we grew as the prevalence and more diagnoses of hypermobility became known. We’ve spent several years collecting good insights and tips on what does (and what hasn’t worked) and put together a repository that is a growing, living library that is searchable in the companion app we offer to everyone at EDS411.

Yet the technology restrained us from growing too large as a collaborative effort. So a few EDS patients joined forces to create a solution and membership solution to offer hope and a way to find answers faster. EDS Joint Effort, with every pun intended, was born.

Our Mission
EDS Joint Effort was born out of a necessity to bridge the gaps in the healthcare journey for those living with Ehlers-Danlos Syndrome (EDS) and its related disorders. Our mission is to empower patients and caregivers with knowledge, resources, and a supportive community to reduce the time to diagnosis and achieve well-managed treatment.

The Challenge
In the world of EDS, timely and accurate diagnosis can often feel like an elusive goal. Patients frequently endure years of misdiagnoses, misunderstood symptoms, and a fragmented healthcare experience. This delay not only prolongs the suffering but also complicates the path to effective management and treatment. We recognized this challenge and decided it was time for a change—a joint effort, if you will.

Our Approach
At EDS Joint Effort, we believe that the best outcomes arise from collaboration. We bring together patients, caregivers, healthcare professionals, and researchers in a collective endeavor to share experiences, insights, and the latest research. By fostering a community-driven approach, we ensure that every voice is heard and that the solutions we create are rooted in real-world needs and experiences.

Our educational advocacy is designed to be both informative and actionable. We provide patients and caregivers with tools to advocate for themselves, equipping them with the knowledge needed to navigate the complex healthcare system confidently. Through workshops, webinars, and resources tailored to the EDS community, we aim to reduce the diagnostic journey’s length and promote treatments that are personalized, evidence-based, and holistic.

The Power of Community
What sets EDS Joint Effort apart is our commitment to community input. We understand that no two EDS journeys are alike, and the collective wisdom of our community is invaluable. We actively seek out and integrate feedback from patients, caregivers, and professionals, ensuring that our initiatives are both inclusive and impactful. This collaborative spirit is the cornerstone of our brand, driving us to innovate and adapt continuously.

Looking Forward
As we grow, EDS Joint Effort remains dedicated to transforming the patient experience. Our vision is a world where EDS patients no longer have to fight for recognition or suffer through prolonged diagnostic delays. Through our collaborative efforts, we are paving the way for a future where every EDS patient receives the care, understanding, and support they deserve.

Join us in this effort—because together, we can make a difference.

We “Eduadvocate” = Elevate, Educate, Empower

What does Eduadvocate mean?

Eduadvocate is a strong, innovative term that perfectly blends education and patient advocacy. It conveys the idea of someone who is not just teaching or providing information but actively advocating for the rights, needs, and understanding of those they support. It’s used to describe a role or service that empowers patients through knowledge while simultaneously championing their cause in the healthcare system. It’s a term that highlights both the informative and supportive aspects of our work, making it clear that our approach is about more than just providing information—it’s about driving meaningful change and support for the EDS community.

At EDS Joint Effort, our mission is to elevate, educate, and empower patients living with Ehlers-Danlos Syndrome. As Eduadvocates, we are dedicated to not only providing you with knowledge but also teaching you the skills to effectively advocate for yourself within the healthcare system.

Elevate: Our Eduadvocates elevate your journey by equipping you with clear, actionable insights. We help you rise above the challenges of EDS, ensuring you have the tools to navigate your care with confidence.

Educate: We focus on teaching you everything you need to know about your condition. As Eduadvocates, we simplify complex medical information, empowering you with the understanding needed to take control of your health.

Empower: Our ultimate goal is to empower you to become your own best advocate. Through guided education and support, we help you build the confidence and skills to speak up for your needs, make informed decisions, and actively participate in your healthcare.

At EDS Joint Effort, being an Eduadvocate means we are here to guide you on your journey to self-advocacy. We believe that with the right knowledge and support, every patient can become a powerful advocate for their own well-being, transforming their healthcare experience from passive to proactive. Together, we’re building a community of informed, empowered patients who are ready to take charge of their health.