EDS_hub

Site dedicated to patient resources for Ehlers-Danlos Syndrome & Associated Conditions. See pinned tweet for site pages during update

#Patient #Resources

[EDS_hub @eds_hub]

Appreciating your patience with broken links as we update the site. For now:
https://t.co/9cWgUPipzX

https://t.co/XoC3DVM8v0

Forms: https://t.co/zphFjN5jki

https://t.co/cbccgSZLcB

And what will be transitioned into links for longcovid resources: https://t.co/m4YpSBzMsG

[Karina Sturm @KarinaSturm]

It is #EDSAwarenessMonth!!!!
Join the "Care-e-oke Challenge" & Make Some Noise for #EDS Awareness! 🦓
Check out the website at https://t.co/g88EvSpMKX to learn more, and please spread the word with your followers too! We need to make some waves!
#Careeoke #EhlersDanlosSyndrome

[Henry Watt @Charlie_Dimmock]

@jdibon @eds_hub @project_eds @H2OhTwist @TheEDSociety @ehlersdanlosuk @EhlersAintEasy @BluesteinLinda @nyitedscenter @SabeehaMalek @EmmaBurnell_ ReTweet pretty please ♥

[Dr. Ann @AnnChildersMD]

1/2 Per article, generalized joint laxity affects 19% of the general population, 38% of patients accessing services for mental illness and/or developmental disabilities: https://t.co/r1nA3fooXh @DrDeborahMD @evolutionarypsy @evolutionarypsy @GeorgiaEdeMD @ChrisPalmerMD

[EDS_hub @eds_hub]

Pinned tweet to help navigate the currently disrupted links

https://t.co/lPRWiZwLDA

[EDS_hub @eds_hub]

Appreciating your patience with broken links as we update the site. For now:
https://t.co/9cWgUPipzX

https://t.co/XoC3DVM8v0

Forms: https://t.co/zphFjN5jki

https://t.co/cbccgSZLcB

And what will be transitioned into links for longcovid resources: https://t.co/m4YpSBzMsG

[EDS_hub @eds_hub]

We are excited about the updates that will be rolling out and want to give an opportunity for YOU to reply to this tweet with what kind of resources would be helpful for you! #EhlersDanlos #NEISvoid

By Community for Community.
@JadeBarclay & @roomcmoo

[EDS_hub @eds_hub]

In the coming months we are hoping to add and refine the resources - if you have any recommendations or feedback, please consider contacting via the contact form
https://t.co/v7sRuMozNg

[limbostate @limbostate1]

@ehlersdanlosuk @HMSACharity @TheEDSociety @eds_hub
My daughter has this

[EDS_hub @eds_hub]

If our templates don't quite hit the spot, an excellent resource is linked here to prepare for appointments and keep track of your personal health. By @GilmerHealthLaw
https://t.co/77hcs8f1V8

[Erin Gilmer (Legacy) @GilmerHealthLaw]

I've got the appointment primer (above), which is specific to the issues for that appointment and a personal health record which is what your EHR should be but never is. https://t.co/1Zk8clVcHS

[EDS_hub @eds_hub]

One of the many reasons we have template available on our site https://t.co/fefXiOqVeZ

[Dr. Ashley | Panicked Foodie (she/her) @PanickedFoodie]

Anyone else with chronic illness(es) prepare for doctor's appointments like they're getting ready to defend a dissertation?

Re-state hypotheses.

Here are my experimental findings from Quest, with some tables and figures.

Here are my conclusions.

And finally, future work.

[EDS Project @project_eds]

Due to the overwhelming interest, we've nearly more than doubled our recruitment numbers! Thank you for all the #support with this #research !! We'll keep you updated as we make our way through 🦓 #EhlersDanlosSyndrome #EDS

[Kathy O'Shea #chronic #migrainelit #migraine @KathyOShea1]

@eds_hub I hope you will take a look at my new anthology, published by Kent State University Press and available now on Amazon: "So Much More than a Headache: Understanding Migraine through Literature." https://t.co/ffmOVLDdLn

[EDS_hub @eds_hub]

And we're back!

[EDS_hub @eds_hub]

Some unavoidable delays on our domain/website should be resolved over the next few days.

Thank you for your patience.

[EDS_hub @eds_hub]

@draparente @roomcmoo @TCM_tweets @ahandvanish @JadeBarclay https://t.co/SOoGPPzu5m

[EDS_hub @eds_hub]

EDShub will be back up and running in the next 24 hours.

Thank you for your patience!

[EDS_hub @eds_hub]

EDShub will be back up and running in the next 24 hours.

Thank you for your patience!

[HatsOffItsAdequate @itsadequate]

@eds_hub our new song about EDS @itsadequate “Every time I win, I’ve something less to give, the next attack. But if we didn’t have to pretend so much of the time that we’re alright. Sometimes it’s ok not to be fine. And I’m not feeling great” https://t.co/LjWk9njvGU

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

@ValkyriesChild @bennessb Cheat sheet templates for patients are good here @eds_hub https://t.co/qZ88LPwkxC -- Helpful for wrangling all the health info and health decisions related to any chronic condition. P

[EDS_hub @eds_hub]

Thanks to @JestNinja for making this photo available freely on @unsplash 🎁 https://t.co/s2EiyIzWMx

[EDS_hub @eds_hub]

Thanks to @CraftedbyGC for making this photo available freely on @unsplash 🎁 https://t.co/MKaaDckVfC