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Orlando is hosting its first Walk for Victory this weekend! Will you be there? You can still sign up! http://bit.ly/2DTydeQ
#MyWalkSavesLives#Marfansyndrome#Marfan#VEDS#vascularehlersdanlos#loeysdietz#LDS#rare#aorticdisease#aorticdissection#WalkforVICTORYpic.twitter.com/VQs0aqQxpZ -
We had a fantastic
#WalkforVictory in Indiana on the 13th! What a beautiful fall day, filled with friends, supporters, and new connections. Thank you, Indiana!#MyWalkSavesLives#marfansyndrome#marfan#loeysdietz#vEDS#connectivetissue#aorta#rare#rareconditionpic.twitter.com/qb1EC64sBd -
Tobias Ehrensperger explains the benefits of our Voith Electrical Drive System. At
#Busworld Europe in Brussels you have the chance to experience our#VEDS in live operation during a test drive.#DriveNewWays http://ow.ly/3rRo50wP99B pic.twitter.com/AwIdshrHWg -
It’s
#VLOG time! July was the beginning of the busy conference season, join me in Houston for the Marfan conference, lots of meetings in between and then see all the prep it took to get ready for our biggest conference to date in Nashville!#eds#veds https://bit.ly/2yIYgmE -
A few members of the
#vEDS community/family getting together after the@vEDSCollabo meeting earlier today! Love these people like crazy.https://youtu.be/HUKZV8RcZlo -
I don’t know if I could be more excited about all the things happening this week and weekend for
#EDS and#vEDS! https://youtu.be/38NeO_PCc-M -
Webinar: Taking Care of Your
#Aorta Presented by Dr. Alan Braverman, Alumni Endowed Professor in Cardiovascular Diseases and Professor of Medicine,@WUSTLmed and Director, Marfan Syndrome Clinic,@BarnesJewish http://bit.ly/2OhYVpD#marfan#marfansyndrome#vEDS#loeysdietzpic.twitter.com/Sx4QfTrQ1R
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Big news! 1. I am back on the exercise train! 2. I am getting married!! 3. The
@vEDSCollabo webinar from July 10th is up at http://vedscollaborative.org/gallery#vEDS https://youtu.be/HMak6TcZBY0 -
How have you handled it when you meet someone who you think has
#vEDS? Do you tell them and how do you do it? Katie@TranslucentOne discusses this difficulty in her vloghttps://buff.ly/32fQRsw -
Katie
@TranslucentOne who lives with#vEDS and Poppy@poppyoa who lives with#kEDS speak with@JenniPettican about living with rarer types of EDS:https://buff.ly/30mBj5p -
In case you missed it: https://youtu.be/l-4rozKwjJ0 This webinar is all about
#vEDS. Thank you@ShereneShalhub@MarfanFdn and Shaine Morris! -
Backpack Health empowers EDS community, providing tools to make health management easier, eliminate need for paperwork binders https://youtu.be/mrM59PtVCHg - 50% off for
#EhlersDanlosSyndrome community https://goo.gl/UWixNa#ZebraStrong#vEDS#patientinfo#digitalhealth@vEDSCollabo -
Reflections for the weekend- My Life with vEDS (July 39, 2018) https://youtu.be/h_KjJ-uBnj8 via
@YouTube.#vEDS@vEDSCollabo -
I’ve done a
#fivebyfive challenge for@Stroopwaffle’s fund-raising campaign! https://youtu.be/f4Nai_7JcRU I nominate@martinfkde@derekcarrqb@ijustine &@rhettandlink to do a FiveByFive! You can donate at: https://www.mydonate.bt.com/fundraisers/fivebyfive … and why not do a FiveByFive!!!#MECFS#vEDSPrikaži ovu nit -
Take a look at the virtual book cover of "
#veds: The Journey Begins" coming soon@AJsChallenge@barnes_johnsonpic.twitter.com/H7Dh5FDLtP -
Vascular Ehlers-Danlos syndrome (vEDS) is a rare type of EDS that can be life limiting https://youtu.be/1jfkiNxc4U4
#EDSAwarenessMonth#veds -
Pls watch & RT short video living with life threatening
#VascularEDS#vEDS#RareDisaseDay@ehlersdanlosuk@veds_tedshttp://youtu.be/1jfkiNxc4U4
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