The VEDS Movement

@VEDSMovement

Through research, education, and support, The VEDS Movement, a division of The , charges forward to improve the outcomes for those living with VEDS.

Vrijeme pridruživanja: studeni 2019.

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  1. 5. velj

    Join us for a webinar on Pregnancy AND Women's Health in 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:

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  2. 4. velj

    Have ? Join us at 6 pm EST today for our VEDS Connect virtual support group.

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  3. 31. sij

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

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  4. 31. sij

    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:

    Poništi
  5. 28. sij

    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

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  6. 27. sij

    There are several studies currently enrolling patients with , including the Natural History Study. Participating in a study is an important personal decision. What should you know before you make your decision?

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  7. 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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  8. proslijedio/la je Tweet
    23. sij

    How can we positively impact our lawmakers? By attending Hill Day 2020! Join me and other warriors affected by Marfan Syndrome and related disorders at Capital Holl on February 26th. Through our voices we show love, strength, resilience, and hope.

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  9. 23. sij

    Carotid Cavernous Sinus Fistula (CCSF) is a medical emergency which may occur without injury in an individual with . Signs: Swooshing sound in the head Redness/pain/bulging around or of the eye Blurred vision

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  10. 22. sij

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

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  11. proslijedio/la je Tweet
    21. sij

    114 days to go! Have you planned your events for DAY on Friday 15th May? REDS4VEDS is a global campaign which takes place on the third Friday of May. The aim of the campaign is to help raise the profile of & funds for research.

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  12. 21. sij

    A medical ID is an important tool in getting the help you need in an emergency. Learn what to put on your medical ID if you have .

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  13. 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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  14. 16. sij

    ICYMI: The is developing a clinical trial to determine if medications currently in use to treat VEDS are effective. If you or your child have VEDS, be to share your thoughts on the clinical trial design before Jan 20 by completing the survey!

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  15. proslijedio/la je Tweet
    15. sij

    "There are lots of things you can do to help someone with a chronic illness. If you’re not sure what to do, please ask. In the meantime, for everyone’s sanity and happiness, please stop saying these four phrases."

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  16. 15. sij

    Our monthly virtual support group, Awaiting Diagnosis, meets tonight at 6 pm EST. If you have not yet been diagnosed with and suspect it or are undergoing evaluation, this group is for you.

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  17. 14. sij

    Our virtual support group, Coping with Loss, meets tonight at 6 pm EST. This group is for those in the community coping with the loss of beloved friends and family members. Learn more and sign up:

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  18. proslijedio/la je Tweet
    13. sij

    Paul Sponseller, member of our Professional Advisory Board and Director of Pediatric Orthopaedics at @HopkinsChildrens has been named a 2019 Top Doc by Baltimore magazine. A well-deserved award for a great physician and a wonderful friend to our community. Congratulations!

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  19. 11. sij

    Happy birthday, Andie from The VEDS Movement! Today would have been Andie’s 21st birthday.

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  20. 11. sij

    We’re toasting to Andie, who would have been 21 today. Happy birthday, Andie!

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