Rezultati pretraživanja
  1. prije 14 sati

    Given my level of fatigue and my fuck up quotient I make a terrible friend but would probably make an amusing podcast. Or studied for behavioral science to start and i always thought if I still had but was rich, I could at least enjoy the flexible/soft skin/eternal youth

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  2. prije 22 sata

    from 2012 on, i poured everything into pushing for a combined education/referral/fundraising/logo effort as . i'm glad someone finally got through on the same idea.

  3. 2. velj
    Odgovor korisnicima i sljedećem broju korisnika:

    Hey, I'm sorry to hear this, also am just wondering if you have also been tested for ? X

  4. 2. velj
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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. 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:

  7. 30. sij
  8. 29. sij

    No, you're bored after literal years of bedrest. You are. Anyway.

  9. Question for Twitter. Did anyone else (particularly with ) have Henoch-Schönlein Purpura (aka ) growing up? It's a form of vasculitis involving itchy rash, fever, vomiting/abdominal pain, the runs, EXTREME pain especially in lower extremities, kidney pain ect.

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  10. 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

  11. 27. sij

    "My name is Keegan from Lucasville Ohio and my victory is I have a strong support system from family and friends." Share your victory & spread awareness in Feb for .

  12. 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?

  13. 27. sij

    Malang- Hum Sirf Apne Liye Jiyenge

  14. 18. sij

    This warrior, this incredible woman - has been taken too soon. Feeling absolutely devastated, I have no words. Chrystal, you were such an inspiration, you fought so hard for awareness. I will never forget you, rest in peace my friend ❤️

  15. 12. sij

    The vEDS ECHO program is dedicated to increasing awareness & education in all aspects of diagnosis & management of syndrome; supporting in caring for patients with . Program facilitated by Dr.

  16. 12. sij

    "Vascular EDS is relentless. Sometimes it’s subtle, but mostly it isn’t. I am a surviving spouse – the love of my life had this relentless disease."

  17. After nearly two years of patient engagement in research, we completed the Comparative Effectiveness Clinical Trial Planning survey. Please help disseminate the survey to reach as many people with in the US as possible.

  18. 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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  19. 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.

  20. 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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