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EDS Today

@EDS_Today

Nonprofit - Ehlers-Danlos Syndromes. Sadly, many never receive a proper diagnosis or treatment within their lifetime.

edstoday.org
Joined April 2009
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Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)Photo by EDS Today (@EDS_Today)
VEDS Study is now open to (ALL)children under 18, and those who have lost their lives. Their next-of-kin can enroll them. They can still be counted, have a voice, and make a difference for others (in their memory)💔😪Thank you! bit.ly/2WmsLMc #vascularEDS #ehlersdanlos
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We are so excited to see our Professional Advisory Board member and VEDS advocate, @ShereneShalhub featured by @vascularsvs. Learn more about her here: buff.ly/3iqGeME
Image from The VEDS Movement (@VEDSMovement)
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Want to learn more about VEDS? Get more VEDS facts here: buff.ly/3i2aRWr
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What is VEDS? Find out more here: buff.ly/3i2aRWr
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fightveds.org/post/new-treat…
New Treatment? New Hope for vEDS

New Treatment? New Hope for vEDS

A new study of a vEDS treatment is moving forward. It could be the first FDA-approved treatment for vEDS.

fightveds.org
There’s a misleading, inaccurate quote that should be corrected. VEDS is “NOT” typically diagnosed in childhood. It’s often misdiagnosed or diagnosed after death….if they even know to look for it, at all! “The eye cannot see what the mind does NOT know.”
Aytu_BioPharma (@AytuBioPharma_) profile pictureAytu_BioPharma@AytuBioPharma_13 Dec 2021
Aytu BioPharma Announces FDA Clearance of Investigational New Drug (IND) Application for AR101/Enzastaurin in Vascular Ehlers-Danlos Syndrome accesswire.com/677123/Aytu-B…
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Aytu BioPharma Announces FDA Clearance of Investigational New Drug (IND) Application for AR101/Enzastaurin in Vascular Ehlers-Danlos Syndrome accesswire.com/677123/Aytu-B…
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Happy Thanksgiving from our table to yours...wishing you all the best!
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What a powerful conversation about grief to have on late night. So much respect for Andrew Garfield and his unforgettable response, and for @StephenAtHome who really goes out of his way to create these human moments on his show ❤️
The Late Show (@colbertlateshow) profile pictureThe Late Show
@colbertlateshow23 Nov 2021
Andrew Garfield shares how art helps him get through grief.
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“It’s a monster that’s sleeping right now.” Thank you, Annie, for sharing your #VEDS story with us. Visit our website to hear her full story, learn about our upcoming clinical trial, and to find out why we’re #ChargingForward4VEDS: bit.ly/3BUa3xX
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The VEDS Movement is saddened to hear of the passing of Trevor Jones. Our condolences go out to his family, friends, and anyone touched by his journey in life. Please help us to continue to spread awareness of #VEDS in our effort to save lives. buff.ly/3G7rNIc
Image from The VEDS Movement (@VEDSMovement)
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👏🏻 thank you too!
This Post is from an account that no longer exists. Learn more
The 2nd annual VEDS Birthday Bash is almost here and the auction is open! Check it out at buff.ly/3mpbihw. And it's not too late to join the party! Go to buff.ly/3ljkapL to sign up. Thanks to our sponsors, @DEFYFoundation, @AytuBioPharma_ & Peter & Linda DiDonato.
Image from The VEDS Movement (@VEDSMovement)
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Get October declared as VEDS Action Month in your area! Find out how here: buff.ly/2XSLSAi
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Aytu BioPharma Announces Formation of New Scientific Advisory Board to Support Development of AR101 for Vascular Ehlers-Danlos Syndrome irdirect.net/prviewer/releas…
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Haven’t seen this yet. Let’s pray they left in some of my John Ritter Foundation and Aortic Dissection info 🙏
JohnRitterFoundation (@JohnRitterFdn) profile pictureJohnRitterFoundation@JohnRitterFdn24 Aug 2021
Brilliant, beloved and gone too soon. In 2003, John Ritter died needlessly due to a misdiagnosed thoracic aortic dissection.After watching, please visit JohnRitterfoundation.org for Thoracic Aortic Disease info and resources. #johnritter #threescompany
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Dr. Enid Neptune is a pulmonary and critical care specialist at Johns Hopkins School of Medicine and will today talk about the #respiratory disorders that are associated with vascular Ehlers-Danlos Syndrome. #VEDS2021 #vEDS
A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Enid Neptune. vEDS Virtual Conference, July 30-31. A profile photograph of Dr. Neptune is shown in a circle in the middle of the graphic.

ALT A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Enid Neptune. vEDS Virtual Conference, July 30-31. A profile photograph of Dr. Neptune is shown in a circle in the middle of the graphic.

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bit.ly/3rLHgqn
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Since 2011, Dr. Prakash has worked in the John Ritter Research Program in Aortic and Vascular Diseases at McGovern Medical School, a part of the University of Texas Health Science Center at Houston (UTHealth). #VEDS2021
A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Siddharth Prakash. vEDS Virtual Conference, July 30-31. A profile photograph of Dr. Prakash is shown in a circle in the middle of the graphic.

ALT A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Siddharth Prakash. vEDS Virtual Conference, July 30-31. A profile photograph of Dr. Prakash is shown in a circle in the middle of the graphic.

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Dr. Demirdas is a clinical geneticist at the Erasmus Medical Center in Rotterdam, The Netherlands. Dr. Dermidas presents for the latest research in vEDS session on the Dutch Cohort. #VEDS2021
A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Dermidas. vEDS Virtual Conference, July 30-31. A profile photograph of Dr. Dermidas is shown in a circle in the middle of the graphic.

ALT A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Dermidas. vEDS Virtual Conference, July 30-31. A profile photograph of Dr. Dermidas is shown in a circle in the middle of the graphic.

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Dr. Jeunemaitre authored or co-authored more than 300 peer-reviewed articles and chapters books. His main scientific interests are the genetic determinants of arterial hypertension and #cardiovascular disorders, among them vascular Ehlers-Danlos syndrome. #VEDS2021#vEDS
A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Xavier JeuneMartre. vEDS Virtual Conference, July 30-31. A profile photograph of Xavier is shown in a circle in the middle of the graphic.

ALT A red graphic with a genetics-themed background. Text reads: Meet the Speakers, Dr. Xavier JeuneMartre. vEDS Virtual Conference, July 30-31. A profile photograph of Xavier is shown in a circle in the middle of the graphic.

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