Nonprofit - Ehlers-Danlos Syndromes. Sadly, many never receive a proper diagnosis or treatment within their lifetime.
Joined April 2009
- Tweets 1,571
- Following 482
- Followers 5,572
- Likes 746
200 Photos and videos
Pinned Tweet
18 Mar 2020
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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EDS Today retweeted
21 Mar 2022
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
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EDS Today retweeted
24 Jan 2022
Want to learn more about VEDS? Get more VEDS facts here: buff.ly/3i2aRWr
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13 Dec 2021
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.”
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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13 Dec 2021
RT @AytuBioPharma_: Aytu BioPharma Announces FDA Clearance of Investigational New Drug (IND) Application for AR101/Enzastaurin in Vascular…
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25 Nov 2021
Happy Thanksgiving from our table to yours...wishing you all the best!
EDS Today retweeted
24 Nov 2021
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 ❤️
23 Nov 2021
Andrew Garfield shares how art helps him get through grief.
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22 Oct 2021
RT @AytuBioPharma_: “It’s a monster that’s sleeping right now.”
Thank you, Annie, for sharing your #VEDS story with us. Visit our website…
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EDS Today retweeted
20 Oct 2021
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
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EDS Today retweeted
6 Oct 2021
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.
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EDS Today retweeted
4 Oct 2021
Get October declared as VEDS Action Month in your area! Find out how here: buff.ly/2XSLSAi
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16 Sep 2021
RT @AytuBioPharma_: Aytu BioPharma Announces Formation of New Scientific Advisory Board to Support Development of AR101 for Vascular Ehlers…
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EDS Today retweeted
24 Aug 2021
Haven’t seen this yet. Let’s pray they left in some of my John Ritter Foundation and Aortic Dissection info 🙏
24 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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EDS Today retweeted
30 Jul 2021
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
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EDS Today retweeted
31 Jul 2021
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
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EDS Today retweeted
31 Jul 2021
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
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EDS Today retweeted
31 Jul 2021
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
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