Global Genes

@GlobalGenes

Leading patient advocacy organization working to eliminate the challenges of rare disease faced by 400 million people worldwide.

We're global!
Vrijeme pridruživanja: studeni 2009.

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  1. Prikvačeni tweet
    9. sij

    With a new year comes new opportunities. Our CEO, Kimberly Haugstad, is excited to kick-off a new decade in .

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  2. prije 16 sati

    "This novel approach has the potential to provide significant benefit on top of currently available therapies." New therapy sotatercept shows promise in a developing drug trial that looks to treat pulmonary arterial hypertension (PAH)."

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  3. prije 17 sati

    Tomorrow is the start of our final seminar. Join us to hear from experts at You can access our previous sessions and download our workbooks on our website.

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  4. 1. velj

    Who will be in Houston next week? If you can't make it, be sure to catch our livestream, and check back in here, where we'll also be live tweeting our tuesday session.

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  5. 1. velj

    Quench Bio hopes to develop new therapies for serious and rare inflammatory diseases by targeting a family of protiens known as gasdermin.

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  6. 31. sij

    “Until today, there were no treatment options specifically for patients with epithelioid sarcoma... The approval of Tazverik provides a treatment option that specifically targets this disease.”

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  7. 31. sij

    Encouraging results seen with drug therapies combating type 1 spinal muscular atrophy.

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  8. 30. sij

    is quickly approaching, what are your plans on the rarest day of the year? Find an event near you on our events hub, or share your own.

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  9. 29. sij

    There's still time to register for next week in Houston! Don't miss out on this opportunity to grow your organization through smart data usage.

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  10. 29. sij

    Dror Bashan, CEO of Protalix Biotherapeutics, comes on our to speak about the company's efforts in pursuing therapies for unmet medical needs for diseases that include Fabry disease, cystic fibrosis, and other inflammatory diseases.

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  11. 28. sij

    “Tepezza is a much-needed breakthrough for a community of people who have historically had to struggle in pain as their symptoms progress." The first ever therapy for thyroid eye disease, Tepezza, has been approved by the

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  12. 28. sij

    Missed our webinar on Creating an Awareness Day? Watch back our recording for tips elevating on your next event.

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  13. 27. sij

    We can't wait to see everyone at our fourth event in Houston! Can't make it? Register for our livestream!

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  14. 27. sij

    “Based on preclinical data, we believe that GTX-102 offers tremendous promise and may one day provide patients with a potentially transformative therapeutic option.” Camille Bedrosian, has high hopes for potential drug treatment for Angelman syndrome.

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  15. proslijedio/la je Tweet
    27. sij

    Caroline Harding & Nicole Boice are powerhouses in the genetic and rare disease space. For both, a very personal why saw them switch their respective high profile careers for a life of advocacy. Click here:

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  16. 26. sij

    Our event, Becoming a Data-Centric Community is one week away! If you can't make it to Houston, you can livestream the event here:

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  17. 25. sij

    "We are still learning. The science is still evolving as is the medical knowledge... There's great hope when you look at the rare disease community." RARE Leader Eric Cole has taken advocacy for his son's disease, Dandy-Walker syndrome, into his own hands.

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  18. 24. sij

    "Patients can play a heroic role in drug development, particularly in rare disease, making the rare real for the next generation.” CEO of Raremark Tim Davis comments on his hopes for the future of research as he steps into his new role.

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  19. 24. sij

    Happy friday! We're gearing up for World Rare Disease Day with with our Blue Denim Genes Ribbons. Order yours by February 21 to get them in time for

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  20. 24. sij

    Mirum Pharmaceuticals, one of our Corporate Alliance members, is one step closer to approval for for a drug intended to treat Alagille syndrome.

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  21. 23. sij

    "Our strategy is to get involved in as many research projects as possible-because even if we don’t get to that point of having a cure yet, we want to make sure that the kids have as high of a quality of life as possible. That’s the most important thing."

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