Rezultati pretraživanja
  1. Today we officially launched the newly formed vEDS UK Steering Group! Our CEO Jared Griffin along with Christina Cooper, Patient Coordinator met the new team of vEDS stakeholders who are directly touched by in Birmingham.

  2. 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?

  3. 4. srp 2019.

    Happy 4th! The Research Collaborative Study is actively enrolling! Those 18+ w/vEDS can help by participating in this study! Click to learn more, and help us reach as many individuals with as possible by retweeting!

  4. 12. sij

    Today would’ve been Andie’s 21st birthday sadly she passed away on Jan 31st from . Today people all over the world are raising a glass to her. Happy Birthday, Andie, from all of us at the Comorbidity Coalition &

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  5. 2. velj

    July 31-August 2, 2020, will see our first ( ) family weekend, partnering with in Cincinnati, USA!⁠ The Ehlers-Danlos Society has secured a grant to fund those in the community with a “pay what you can afford” program.⁠

  6. 17. svi 2019.

    Today is , an awareness day for rarest &most severe of 13types of - . Learn signs &RT posts 2save a life. • Facial features: prominent eyes, thin lips &nose, attached earlobes, translucent skin • Varicose veins • Organ rupture/tears

  7. 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

  8. 4. stu 2019.

    On way back down to London, busy week ahead for

  9. 11. sij
  10. 𝙇𝙤𝙤𝙠𝙞𝙣𝙜 𝙗𝙖𝙘𝙠 𝙖𝙩 2019 With the charity , we also funded a project at the EDS National Diagnostic Service at Northwick Park Hospital, London to create one of the largest research databases in the world.

  11. 29. sij 2019.

    Back to London ahead of tomorrow’s busy day of meetings & presentations.

  12. 10. srp 2019.

    Thank you for tuning into the webinar! We hope as many people as possible affected by will watch it before our August 4th meeting. We will provide details once the recording is posted!

  13. 30. pro 2018.

    Sadly we have lost another young woman from . 😢 My condolences to family and friends. 💗 R.I.P Dawn 💗🙏

  14. should be considered in the differential diagnosis of spontaneous and in a young individual.

  15. 19. ruj 2019.

    For I am re-sharing the first episode of Staying Connected, a podcast of stories with or . Bridgette needed 12 surgeries following an angiogram which ruptured arteries, including her aorta.

  16. 28. velj 2019.

    vEDS here I wish it were rarer, I wish I were the only one, because then noone else would be this delicate and in so much pain. I would take it all on me, just to save anyone else from any form of Because it's wank

  17. Becoming your own advocate: It is not uncommon for someone with to attend their local A&E department, only to find that the medical staff have never heard of the condition. It is important that you inform them of a diagnosis

  18. POCUS Tip: Do not mistake the IVC for the aorta! Check out our free printable infographic on scanning the abdominal aorta!

  19. 17. svi 2019.
  20. 16. stu 2019.

    12.18.19 my Alexa would have been 14. My physcian didn't listen when I told her something was wrong. She actually convinced me it was all in my head. Forgiveness took years. A hematoma behind the placenta caused me to deliver her too early.

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