IndoUSrare

@indousrare

IndoUSrare builds collaborative BRIDGES of Hope between US and India to engage stakeholders of for .

Vrijeme pridruživanja: studeni 2018.

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  1. 4. velj

    "Change mindset from donations to investments" - Venture Philanthropy

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    3. velj

    is *critical* for rare diseases kids don't have until 2025 to wait to stop this nonsense. We need this NOW 📅

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    4. velj

    Dr. Spencer says that patients and caregivers know a lot more about the disease than most of the physicians that they talk to. How do we get that input appropriately into clinical trials?

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  4. 2. velj
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    28. sij

    Dr Chris P Austin, Director, stated that we have a systems problem in developing and deploying treatments for patients. We need a system that gets more treatments to more patients quickly.

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    26. sij

    robbing the childhood of taking away the ability to walk, play , eat and even breath. the FDA approved treatment is beyond our reach. bring Help Us Win

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    26. sij

    let’s pledge No parents has 2 go through d grief of burying their kids , Rest in peace dear Angels. parent r helplessly watching children dying slow death

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    27. sij

    Absence of several different types of clotting factors in the blood are associated with different varieties of Hemophilia. (1/2)

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    22. sij
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    20. sij

    "Orphan drug policies can have three objectives: improving access, incentivizing R&D, and lowering costs to patients." Joel Lexchin talks existing orphan drug policies in the U.S. and Australia, and what that will mean for Canada's impending policy.

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    16. sij
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    16. sij

    We need to ensure these life-saving programs continue! Please join us in asking him to do the right thing:

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    15. sij

    Day 3 at . Don't forget to stop by and connect with the community!

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  14. 13. sij

    Our Founder Chairman is at this week for . Great timing policy announcement today! – mjesto: Union Square

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  15. 13. sij
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    13. sij

    MDA Awards More Than $1 Million in Venture Philanthropy Funding to AavantiBio to Develop Gene-Targeting Therapy for Friedreich’s Ataxia

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  17. 13. sij
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  18. 10. sij
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    9. sij

    Every month we will be celebrating a ! Check out our Facebook to find out more about the wonderful hero Lachlan a.k.a. Chow Chow!

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  20. 10. sij

    Excellent , we have a couple patients to refer. Great commitment by

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