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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 youthPrikaži ovu nit -
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#CTDhttps://www.marfan.org/about-us/news/2019/12/02/veds-movement-launches-thevedsmovementorg … -
Hey, I'm sorry to hear this, also am just wondering if you have also been tested for
#vEDS? X -
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. https://buff.ly/2A0aPdS pic.twitter.com/PlWEL6Li34
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Join us for a webinar on Pregnancy and 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: https://bit.ly/2OhTKUp
#VEDS#VascularEDSpic.twitter.com/SD69Tke8On
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We now have an #AffiliatedPartner from#Malta
- Mater Dei Hospital! Welcome to Drs. @MaryanneCaruana and@kevincas0 who will#collaborate with the Heritable Thoracic#AorticDiseases#HTAD and#MSA#vEDS WGs!#Marfan#ERNeu
https://vascern.eu/new-vascern-affiliated-partner-from-malta/ … @judbacke@robert_leemapic.twitter.com/6Jhlc1TlPm
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No, you're bored after literal years of bedrest. You are. Anyway.
#imreadytoorder#selfie#veds https://www.instagram.com/p/B77CL3jpRma/?igshid=zqfr93zf2vck … -
#VEDS affects both men and women of all races and ethnic groups. The best estimates suggest about 1 in 40,000-50,000 people are affected, but many people do not know they have#VascularEDS#VEDSFastFactshttps://bit.ly/2uAz6rv -
"My name is Keegan from Lucasville Ohio and my victory is I have a strong support system from family and friends."
#MarfanVictoryChallenge Share your victory & spread awareness in Feb for#MarfanAwarenessMonth. http://bit.ly/2RQ8Wce#Marfansyndrome#LoeysDietz#VEDS pic.twitter.com/RH29LNWTeD
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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? https://bit.ly/38KYglQ#VascularEDS -
Malang- Hum Sirf Apne Liye Jiyenge
#AdityaRoyKapur#DishaP#AnilK#KunalK#VedS http://bit.ly/2O4u4dH -
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#RIPpic.twitter.com/VAe6ti1JEu
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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 https://buff.ly/2R9kUgX pic.twitter.com/42iDnyvONZ
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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." https://buff.ly/2NlCq0n
#vEDS#vascular#vascularEDS -
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.@UWVascsurghttps://twitter.com/vEDSCollabo/status/1207862342995734529 … -
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. http://is.gd/vedstrial https://redcap.iths.org/surveys/index.php?s=RDFD4R3HL4 …Prikaži ovu nit -
https://www.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 -
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! https://www.vedscollaborative.org/get-involvedPrikaži ovu nit
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