vEDS Collaborative

@vEDSCollabo

The vascular Ehlers-Danlos Syndrome Collaborative is a network of stakeholders working to advance patient-centered outcomes research. Current funding:

United States
Vrijeme pridruživanja: ožujak 2018.

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  1. 19. sij

    Such a great loss. Our condolences, thoughts, and prayers go out to her family and friend.

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  2. 1. sij

    Wishing all a Happy New Year!

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  3. 19. pro 2019.

    Thank you for funding the engagement work and research prioritization that lead to this survey development.

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  4. 19. pro 2019.

    Please share the link to the survey.

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  5. 19. pro 2019.
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  6. 19. pro 2019.

    Our vEDS Collaborative Comparative Effectiveness Clinical Trial Planning Survey is up! If you are in the US & have , please complete this 10-15 min survey to help us design the trial that matters to you.

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  7. 12. pro 2019.

    We have enrolled 100 participants in the 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.

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  8. 2. pro 2019.
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  9. 2. pro 2019.

    Holiday Research update: 91 participants are enrolled in the 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!

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  10. proslijedio/la je Tweet
    21. lis 2019.

    natural history study for vascular EDS 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

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  11. 23. ruj 2019.
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  12. 23. ruj 2019.

    Details in the flyers and here; .

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  13. 23. ruj 2019.

    We have 51 participants enrolled in the Collaborative study! Thank you! Our goal is to reach100 by the years end. Help us reach as many people w/ vEDS as we can! ⁦⁩ ⁦⁩ ⁦⁩ ⁦⁩ ⁦⁦⁩ ⁦

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  14. proslijedio/la je Tweet
    14. ruj 2019.

    My cousin passed away from 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.

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  15. proslijedio/la je Tweet

    Pre-Registration open for the Vascular EDS Conference May 2020 at Bury. Tickets free to patients & families touched by and also clinicians wanting to learn more about this rare genetic disorder. More info:

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  16. proslijedio/la je Tweet
    12. ruj 2019.
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  17. 12. ruj 2019.

    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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  18. 9. ruj 2019.

    Our sincerest condolences to Jessica’s family and friends. ❤️

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  19. proslijedio/la je Tweet
    3. ruj 2019.

    Join us in Seattle on awareness day on 9/19/2019. This is our first event for people with aortic dissection and their families.

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  20. proslijedio/la je Tweet

    The first ⁦⁩ ⁦⁩ manuscript is out in ⁦⁩. This survey was our initial step to build a framework for Vascular Ehlers-Danlos Syndrome patient centered outcome research . ⁦⁦

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