Crowdsourced Care:
A Comprehensive
Ehlers-Danlos syndrome (EDS)
Resource Hub
IS THIS YOUR CHRONIC PATIENT EXPERIENCE?
Searching for an EDS diagnosis, symptom management tips and resources to feel more in control of your health?
Challenged to find expert medical providers’ insights from others who get it, without being dismissed or disbelieved?
Tired of the online patient forums spinning up negative spirals? Want to instead foster hope?
then you need this
EDS411 Empowers a Patient-led Revolution of
Crowdsourcing Your Care
SAVE BRAIN POWER
Access a searchable hyperlink hub curated by others just-like-you and just-in-time for easy retrieval you can save to your favorites for later.
Dr. Google’s algorithm wont deliver this! Imagine a day with no more massive medical binders!
SAVE TIME
Explore a vast living library of symptoms, medical texts, treatment options, expert webinar videos, life hacks, and quick links to expert doctor insights and what patients say works. Curated collaboratively and vetted by fellow EDS experts.
SAVE MONEY
Access full articles curated for patients and caregivers for free! Join now.
Coming soon, accepting partnerships with nonprofits and healthcare providers to grow the network.
OUR Progressive WEB app’s features & functionality
A community-led searchable repository of credible EDS medical educational insights, plus what’s upvoted as most useful by users
Free 24/7 patient access to real-time updated expert insights where doctors, patients and advocates can contribute
A growing resource hub for EDS/HSD and comorbidities carefully vetted before inclusion by an advisory board of EDS experts
Add easy access to you phone’s home screen, (it’s not an app in app stores yet) to create your personal favorites list, go directly to original resource links to research, news, blogs, articles, products, tools and much more.
join the community collaboration
where knowledge is shared for the common good
OUR GOAL IS FOREVER free for patients & Caregivers
HOW TO GET IT
1
Subscribe
Click the join link YES I WANT THIS! to join the community striving to stay up-to-date on the latest EDS medical insights and news at your fingertips.
2
Instant access
Expect an email with instant access along with a tutorial on how to navigate the tool. Plus, you can contribute to the collaborative effort of by adding to a simpler solution for trusted knowledge.
3
Find clarity
Gain access to carefully curated community best resources in a hyperlink hub that’s regularly updated. Also see what’s trending as the best resources in the dazzle.
Research proves CONNECTIONS MATTER
“Patient in the study enjoyed time spent on social media and found that their online interactions allowed them to connect with others they felt they could relate to.”
ARe YOU A PRACTITIONER LOOKING TO ENHANCE YOUR PRACTICE FOR COMPLEX PATIENTS?
Searching for answers to help your most complex patients when you have no time to keep up with new research?
Challenged to meet the growing needs and demands of well-informed patient populations forced to become experts in their own conditions?
Wish you had an easy way to share treatment options with your complex patients or other curious providers?
Need a solution to share what you’ve learned with the wider community? Want to build courses to train others?
Interested in an easy way to add to a growing body of knowledge for these underrecognized disorders?
About
EDS 411 Living Library promises to be a resource-rich modern-day
trading post where extensive medical experts’ knowledge with patient community insights elevate, educate and empower people impacted by EDS and its common comorbidities. Not held by any one nonprofit or entity allows open source style insights to flourish bubbling up from the people most impacted. The collaborative collection is powered by fellow patients filled with easy access to hard-to-find credible medical expertise you won’t find searching Dr. Google.
The EDS Living Library means finding answers faster.
With simple search and filtering tools, access a wealth of curated knowledge, medical research, and much more from the EDS living library. Plus, you too can add to the collection of growing information. Expedite your quest for answers to reduce time to diagnosis and access to potential treatment options.
The resources are so needed by the EDS community. Thank you for sharing your gifts.
It’s information I’ve been scouring the internet for all in a searchable one-stop shop of what’s relevant for my conditions and care.
Not sure how you’re doing this and gathering so much information, but I’m grateful you did.
Brought to you by the Author
T O G E T H E R, C R E A T I N G
A L I V I N G L I B R A R Y
FAQs
1
How can I contribute?
Within the web-based app, look for the + plus sign to add any URL (documents and files not yet accepted). Entries are vetted by experts for credibility before inclusion in the repository.
2
How long did it take to compile this information?
Like many people with chronic invisible conditions, we’re forced to become our own experts in our diagnoses. This database collection took over 20 years to compile and it too good not to share.
3
How do I use the EDS411 living library app?
There’s a short tutorial video on how to leverage the volumes of knowledge related to EDS, hypermobility and its common comorbidities. You’ll find ways to stay up-to-date, see what’s trending lately and hopefully find answers faster.
4
Can I share the resources with others?
As long as we can keep the lights on and the web servers stable, please share with others. We kindly accept gifts and donations to fund future development. Our motto is #sharingiscaring so we pay it forward. EDS411 is accessible on any mobile device and web browser (not yet found in app stores).
Share EDS411
“Only together, will we elevate, educate and empower our community towards better outcomes. Access to knowledge is where change happens.”
“My life and family were earthquaked at the diagnoses of hEDS, POTS, and CCI. I lost most of what I loved and valued to an under recognized illness no one believed was real.
My dream is to help others find a better path to reduce time to diagnosis, diagnostic testing, and development of effective treatments.”
be well! xoxo, christie
@christiecoxcalm
Check out my hypermobility guidebook at
@Copyright 2024. All rights reserved.
Questions, comments, concerns?
Email us at edssharenews@gmail.com