EDS Today

@EDS_Today

Nonprofit - Ehlers-Danlos Syndromes. Sadly, many never receive a proper diagnosis or treatment within their lifetime.

New Jersey
Vrijeme pridruživanja: travanj 2009.

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  1. Prikvačeni tweet
    9. kol 2019.

    ATTN: Confirmed Vascular EDSers. Please enroll and help us to make a huge difference for ALL vEDS patients. The more people enrolled, the more knowledge we gain. TY RT

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  2. proslijedio/la je Tweet
    31. sij

    This webinar has now been updated to include women’s health issues in VEDS as well!

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  3. 31. sij

    VEDS Movement: next webinar ”Pregnancy and Women’s Health in VEDS (Vascular Ehlers-Danlos Syndrome)” Feb 13th at 6 pm EST. Presented by Melissa Russo, MD, Assistant Professor of Obstetrics and Gynecology at Brown University. Register here:

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  4. proslijedio/la je Tweet
    24. sij

    ICYMI: Join us for a webinar on Pregnancy and on February 13, 6 pm EST. This webinar will be presented by Melissa Russo, MD, Brown University. Register here:

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  5. 31. sij
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  6. proslijedio/la je Tweet
    31. sij

    Next Virtual Medical Symposium webinar: Pregnancy and Marfan Syndrome Melissa Russo, MD Register for free:

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  7. proslijedio/la je Tweet
    27. sij
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  8. proslijedio/la je Tweet
    24. sij
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  9. proslijedio/la je Tweet
    22. sij

    Tonight, our Parents virtual support group meets at 8 pm EST!

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  10. proslijedio/la je Tweet
    17. sij

    We are excited to announce an upcoming webinar on Pregnancy and on February 13 at 6 pm EST. This webinar will be presented by Melissa Russo, MD, Assistant Professor of Obstetrics and Gynecology at Brown University. Register here:

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  11. 14. sij

    Thank you! If you haven’t filled out this survey please click this link:

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  12. proslijedio/la je Tweet
    8. sij

    Some individuals with sleep with their eyes open, or partially open. Do you sleep with your eyes open?

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  13. proslijedio/la je Tweet
    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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  14. proslijedio/la je Tweet
    7. sij

    Tonight at 6 pm EST, join our monthly VEDS Connect support group for individuals impacted by . This group is an opportunity for those with to meet others affected and talk about the day-to-day challenges we face. Learn more and sign up:

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  15. proslijedio/la je Tweet
    17. pro 2019.

    This week we have two support groups meeting tomorrow (December 18) for the community! Awaiting Diagnosis at 6 pm EST, and our VEDS Parents group at 8 pm EST. Learn more and sign up at

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  16. 16. pro 2019.

    We received this question to ask patients or physicians who have treated those with (with a blood clot) with a drug called Argatroban? Could you share your experiences, thank you!

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  17. proslijedio/la je Tweet

    Join us today at 1:00pm EST for our online vEDS Parents support group. If you are a parent living with vascular Ehlers-Danlos syndrome ( ), or a parent of a child who has vEDS, please do join us for our virtual support group.⁠

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  18. proslijedio/la je Tweet
    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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  19. proslijedio/la je Tweet
    7. pro 2019.
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  20. proslijedio/la je Tweet
    5. pro 2019.

    Only a few days until the webinar by on the Management of Dissections &Aneurysms in , hosted by . Register for the webinar to watch live on Dec 9, 7 pm Eastern, or to be among the first to receive the recording.

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  21. proslijedio/la je Tweet
    4. pro 2019.

    ICYMI: We launched Monday! Just for VEDS! Read about it here:

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