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The Chronic Theory ♿️ 6. velj
Professor Rodney Graham saying it as it is.. A huge loss to the NHS and patients with who will never be able to experiencehis clinical brilliance.
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Nix 6. velj
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The VEDS Movement 5. velj
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:
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ogredon 5. velj
Please consider what we could accomplish with a simple, inclusive, marching banner, so every new cousin-condition can join us without redesign.
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D.A. Roach, Author 5. velj
Your Valentine's read! "This book should be a movie..." - Amazon reviewer Rarity, by D.A. Roach
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The VEDS Movement 4. velj
Have ? Join us at 6 pm EST today for our VEDS Connect virtual support group.
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AMANDA EDS 🇬🇧🏴󠁧󠁢󠁥󠁮󠁧󠁿 3. velj
Odgovor korisniku/ci @DrJamieFryer @EmergMedDr
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 the risk of dissection increases. Same with . Worse with happens with too
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Lumens 3. velj
Odgovor korisniku/ci @epilepticbear
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 but was rich, I could at least enjoy the flexible/soft skin/eternal youth
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ogredon 2. velj
from 2012 on, i poured everything into pushing for a combined education/referral/fundraising/logo effort as . i'm glad someone finally got through on the same idea.
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Nicola Jeffery 2. velj
Odgovor korisniku/ci @skyejromance @jenbrea i 10 ostali
Hey, I'm sorry to hear this, also am just wondering if you have also been tested for ? X
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Ortho-SEDh 2. velj
Odgovor korisniku/ci @guyotacla
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EhlersDanlos Society 2. velj
July 31-August 2, 2020, will see our first ( ) family weekend, partnering with 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.⁠
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The VEDS Movement 27. sij
There are several studies currently enrolling patients with , including the Natural History Study. Participating in a study is an important personal decision. What should you know before you make your decision?
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Lara Bloom 18. sij
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 awareness. I will never forget you, rest in peace my friend ❤️
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EhlersDanlos Society 12. sij
The vEDS ECHO program is dedicated to increasing awareness & education in all aspects of diagnosis & management of syndrome; supporting in caring for patients with . Program facilitated by Dr.
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EhlersDanlos Society 12. sij
"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."
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Sherene Shalhub MD 20. pro
After nearly two years of patient engagement in research, we completed the Comparative Effectiveness Clinical Trial Planning survey. Please help disseminate the survey to reach as many people with in the US as possible.
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vEDS Collaborative 20. pro
Our vEDS Collaborative Comparative Effectiveness Clinical Trial Planning Survey is up! If you are in the US & have , please complete this 10-15 min survey to help us design the trial that matters to you.
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vEDS Collaborative 12. pro
We have enrolled 100 participants in the 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.
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vEDS Collaborative 3. pro
Holiday Research update: 91 participants are enrolled in the 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!
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