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.

Medijski sadržaj

  1. 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

  2. 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 ().

  3. 4. velj
  4. 4. velj

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

  5. 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.

  6. 4. velj

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

  7. 4. velj

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

  8. 4. velj

    . using social listening to listen and observe. Don't just look for answers in the obvious places.

  9. 4. velj

    We crowdsourced data and we didn’t just publish the results in medical literature but in general media as well.

  10. 4. velj

    “If it’s not in the literature then the doctors don’t read about it, researchers don’t know about it and the FDA won’t recognize it.”

  11. 4. velj

    We’re learning about drug repurposing and crowdsourcing from Dr. Pullen of the Chion Foundation and Maria Picone of .

  12. 4. velj

    Keys to a good partnership framework.

  13. 4. velj

    What types of data and platforms are patient organizations using?

  14. 4. velj
  15. 4. velj

    No one thinks about life cycle at the beginning but that is when you should think about it to determine what ultimate success looks like and to avoid mission creep.

  16. 4. velj

    Make sure you know what your definition of collaboration is and that everyone agrees before you start.

  17. 4. velj

    Ever wonder what a consortium does? Now you know.

  18. 4. velj

    In response to consortia-fatigue, put together a consortia-pedia catalogue.

  19. 4. velj

    Kristin Schneeman of is sharing how to manage multi-stakeholder collaborations.

  20. 4. velj

    How can we engineer something for patients that acts like GPS to get you to the right doctors, treatments and your final destination of a cure? That’s what is creating with

Čini se da učitavanje traje već neko vrijeme.

Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.

    Možda bi vam se svidjelo i ovo:

    ·