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Such a great loss. Our condolences, thoughts, and prayers go out to her family and friend.https://twitter.com/TranslucentOne/status/1218636872584519682 …
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Wishing all a Happy New Year!
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Thank you
@PCORI for funding the engagement work and research prioritization that lead to this survey development.#RareDisease@RareDiseasesPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Please share the link to the survey.
@TheEDSociety@VEDSMovement@MarfanFdn@reds4veds@EDS_TodayPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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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. http://is.gd/vedstrial https://redcap.iths.org/surveys/index.php?s=RDFD4R3HL4 …Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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@VEDSMovementHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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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!https://www.vedscollaborative.org/get-involvedPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
vEDS Collaborative proslijedio/la je Tweet
@vEDSCollabo natural history study for vascular EDS#veds Those 18+ genetically confirmed & deceased can sign up. Also, working on approving children & designing a clinical trial to compare medications for vEDS. Take a sec to find out more and sign up TY https://bit.ly/2pIJb3m pic.twitter.com/oCLarlsteX
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We have 51 participants enrolled in the
#vEDs Collaborative study! Thank you! Our goal is to reach100 by the years end. Help us reach as many people w/ vEDS as we can! @TheEDSociety @MarfanFdn @EDS_Today @cureveds @RareDiseasespic.twitter.com/j35zo3o5ug
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vEDS Collaborative proslijedio/la je Tweet
My cousin passed away from
#VEDS this week. As a result her two boys are orphaned. Please keep them in your thoughts and prayers and support them if you are able.#edsawareness#RareDisease#EDS https://www.gofundme.com/f/jenae-heart-for-her-boys?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cp+share-sheet …pic.twitter.com/1qiQ9j4Zcp
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vEDS Collaborative proslijedio/la je Tweet
Pre-Registration open for the Vascular EDS Conference May 2020 at
@Village_Hotels Bury. Tickets free to patients & families touched by#vEDS and also clinicians wanting to learn more about this rare genetic disorder. More info: https://www.surveymonkey.co.uk/r/veds2020 pic.twitter.com/aab3d7Y02r
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vEDS Collaborative proslijedio/la je Tweet
Now.. 24 events in over 14 countries. Aortic Disease Awareness Day is coming.
@ShereneShalhub@gilanii9@sloaneguy@sparreljung@ThinkAorta@vascern@VASCevidence@LDSFoundation@ehlersdanlosuk@MarfanTrust@mundomarfan@MarfansyndromeS@vEDSCollabopic.twitter.com/zooqShrf5b
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We sadly send our condolences to the family and friends of Jenae Nixon, who passed from vEDS at the young age of 35. Our hearts and thoughts are with community, who is rocked from the death of two young women within a week.
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Our sincerest condolences to Jessica’s family and friends.
https://twitter.com/AJsChallenge/status/1170261636071997440 …
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vEDS Collaborative proslijedio/la je Tweet
Join us in Seattle on
#aorticdissection awareness day on 9/19/2019. This is our first event for people with aortic dissection and their families.@ThinkAorta@AorticDissectUS@MarfanFdn@ADsept19@vEDSCollabo@TheEDSocietyhttps://twitter.com/UWSurgery/status/1168949735513870336 …
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vEDS Collaborative proslijedio/la je Tweet
The first
@vEDSCollabo @PCORI manuscript is out in @avsgjournal. This survey was our initial step to build a framework for Vascular Ehlers-Danlos Syndrome#VEDS patient centered outcome research#PCOR. @UWVascsurghttps://www.sciencedirect.com/science/article/pii/S0890509619305850 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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