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The Chronic Theory ♿️
@ZebraOrphans
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6. velj |
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Professor Rodney Graham saying it as it is.. A huge loss to the NHS and patients with #EhlersDanlosSyndrome #HSD #vEDS #hEDS who will never be able to experiencehis clinical brilliance. #PatientExperience pic.twitter.com/t4GuUXGeZE
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Nix
@shezthegoddess
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6. velj |
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Major surgery tomorrow.
Spread awareness. #EDS #Elhersdanlossyndrome #vEDS #VascularEhlersDanlosSyndrome pic.twitter.com/dn42LLeHdT
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The VEDS Movement
@VEDSMovement
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5. velj |
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Join us for a webinar on Pregnancy AND Women's Health in VEDS! February 13, 6 pm EST.
This webinar will be presented by Melissa Russo, MD, Brown University. Register here to attend live or be among the first to receive the recording: bit.ly/2OhTKUp #VEDS #VascularEDS pic.twitter.com/Nsh4nMw7xx
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ogredon
@ogredon1
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5. velj |
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Please consider what we could accomplish with a simple, inclusive, marching banner, so every new cousin-condition can join us without redesign.
#CTDsurvivors #MarfanSyndrome #EhlersDanlosSyndrome #LoeysDietzSyndrome #VEDS #CTD @marfanfdn
thevedsmovement.org pic.twitter.com/JullOKUCaw
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D.A. Roach, Author
@daroach12books
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5. velj |
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Your Valentine's read!
"This book should be a movie..." - Amazon reviewer
Rarity, by D.A. Roach
amzn.com/B00YTETSGK
#YA #lovestory #romance #veds #raiseawareness #raredisorder #yaromance #yaread #book #yabook… instagram.com/p/B8MB1-IgPLo/…
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The VEDS Movement
@VEDSMovement
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4. velj |
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Have #VEDS? Join us at 6 pm EST today for our VEDS Connect virtual support group. #VascularEDS
bit.ly/3baewz3 pic.twitter.com/iMaONp5k4m
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AMANDA EDS 🇬🇧🏴
@EDSAmanda
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3. velj |
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So you knew cipro could cause Achilles tendon rupture? Collagen in Achilles tendon & Aorta too. So Marfan get aortic aneurysm overtime but if you gave #Fluoroquinolones #ciprofloxacin the risk of dissection increases. Same with #EDS. Worse with #vEDS happens with #hEDS too
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Lumens
@epilepticbear
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3. velj |
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Given my level of fatigue and my fuck up quotient I make a terrible friend but would probably make an amusing podcast. Or studied for behavioral science to start and i always thought if I still had #veds but was rich, I could at least enjoy the flexible/soft skin/eternal youth
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ogredon
@ogredon1
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2. velj |
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from 2012 on, i poured everything into pushing for a combined education/referral/fundraising/logo effort as #CTDsurvivors .
i'm glad someone finally got through on the same idea.
#EhlersDanlosSyndrome #MarfanSyndrome #LoeysDietzSyndrome #VEDS #CTD
marfan.org/about-us/news/…
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Nicola Jeffery
@NicolaCJeffery
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2. velj |
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Hey, I'm sorry to hear this, also am just wondering if you have also been tested for #vEDS? X
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Ortho-SEDh
@guyotacla
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2. velj |
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EhlersDanlos Society
@TheEDSociety
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2. velj |
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July 31-August 2, 2020, will see our first #vascularEDS ( #vEDS) family weekend, partnering with @CampJoyOhio in Cincinnati, USA! The Ehlers-Danlos Society has secured a grant to fund those in the community with a “pay what you can afford” program. buff.ly/2A0aPdS pic.twitter.com/PlWEL6Li34
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The VEDS Movement
@VEDSMovement
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27. sij |
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There are several studies currently enrolling patients with #VEDS, including the @vEDSCollabo Natural History Study. Participating in a study is an important personal decision. What should you know before you make your decision? bit.ly/38KYglQ #VascularEDS
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Lara Bloom
@LaraBloom
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18. sij |
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This warrior, this incredible woman - has been taken too soon. Feeling absolutely devastated, I have no words. Chrystal, you were such an inspiration, you fought so hard for #vEDS awareness. I will never forget you, rest in peace my friend ❤️ #EhlersDanlosSyndrome #RIP pic.twitter.com/VAe6ti1JEu
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EhlersDanlos Society
@TheEDSociety
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12. sij |
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The vEDS ECHO program is dedicated to increasing awareness & education in all aspects of diagnosis & management of #vascularEhlersDanlos syndrome; supporting #healthprofessionals in caring for patients with #vEDS. Program facilitated by Dr. @ShereneShalhub buff.ly/2R9kUgX pic.twitter.com/42iDnyvONZ
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EhlersDanlos Society
@TheEDSociety
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12. sij |
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"Vascular EDS is relentless. Sometimes it’s subtle, but mostly it isn’t. I am a surviving spouse – the love of my life had this relentless disease." buff.ly/2NlCq0n #vEDS #vascular #vascularEDS
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Sherene Shalhub MD
@ShereneShalhub
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20. pro |
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After nearly two years of @PCORI patient engagement in #VEDS research, we completed the @vEDSCollabo Comparative Effectiveness Clinical Trial Planning survey. Please help disseminate the survey to reach as many people with #VEDS in the US as possible. @UWVascsurg twitter.com/vEDSCollabo/st…
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vEDS Collaborative
@vEDSCollabo
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20. pro |
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Our vEDS Collaborative Comparative Effectiveness Clinical Trial Planning Survey is up! If you are in the US & have #VEDS, please complete this 10-15 min survey to help us design the trial that matters to you.
is.gd/vedstrial redcap.iths.org/surveys/index.…
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vEDS Collaborative
@vEDSCollabo
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12. pro |
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vedscollaborative.org/get-involved
We have enrolled 100 participants in the #vEDS natural history study! This study is crucial to future vEDS research. Let’s keep the momentum going and get 300 people with confirmed vEDS enrolled by April 2020. @EDS_Today @TheEDSociety @VEDSMovement
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vEDS Collaborative
@vEDSCollabo
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3. pro |
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Holiday Research update: 91 participants are enrolled in the #vEDs Collaborative study! 9 more to reach our goal of 100 by year end! We are thankful to all who donated & fundraised to make this possible! Also we are now working on collecting the records! vedscollaborative.org/get-involved
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