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 11 sati

    We've enjoyed connecting and educating this week during . Thanks to all in-person and livestream attendees!

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  3. prije 16 sati

    Collaboration is key for the community. Kimberly Haugstad shares our approach in this podcast.

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  4. 4. velj

    Thank you to everyone who has followed along with the series. You can find resources for all of the workshops here:

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  5. proslijedio/la je Tweet
    4. velj

    Regarding including minorities at much higher rates in for , of says “Good science requires it. Good treatments require it.” 👏👏👏

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  6. 4. velj

    “Health is not a waffle. You can’t pour syrup into one square and expect it to stay there. Health research is more like spaghetti. If you pour sauce on one noodle, it’s likely to get everywhere” -Robyn Correll Carlyle, MPH, CHWI

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  7. 4. velj

    Community health workers are a really important bridge to underserved populations. They can be your eyes and ears so that you know a community’s real concerns and needs.

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  8. 4. velj

    “We have to figure out how to establish the collaborations we need to provide health equity” -Khristal K. Davis, JD, Founder, Texas Rare Alliance

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  9. 4. velj

    "We cannot treat what we do not diagnose." - Khrystal K. Davis, JD, Founder, Texas Rare Alliance

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  10. 4. velj
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  11. 4. velj

    Quick Poll: What are some barriers that keep you from reaching more patients? Answer here:

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  12. 4. velj

    Now for a panel on expanding your engagement to underserved populations with Dr. Horn (LHC BioSolutions), Linda Wade and Jordan Shumway (), Khrystal Davis (Texas Rare Alliance), and Robyn Carlyle ().

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  13. 4. velj
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  14. 4. velj

    You have to know what the human looks like to reproduce it in a mouse and natural history studies can help with that.

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  15. 4. velj

    Remember to define your research goals when embarking on a natural history study.

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  16. 4. velj

    Quick Poll: Are there clinical guidelines for the disease that your organization focuses on? Answer here

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  17. 4. velj

    Establishing a primary database with a positive effect of having all protocols listed on , allowing researchers and patient families to get in contact with appropriate resources.

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  18. 4. velj

    Our next panel on clinical guidelines for data features Paige Nues of and Dr. Suter and Dr. Glaze of .

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  19. 4. velj

    Q&A time with Dr. Pullen and Maria. Ask here:

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  20. 4. velj

    The is willing to hear the patient voice so don't be afraid to ask for help.

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  21. 4. velj

    Hot Tip: You need IRB approval or waiver or you won’t be able to publish your data.

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