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Global Genes
Leading patient advocacy organization working to eliminate the challenges of rare disease faced by 400 million people worldwide.
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Global Genes 11 h
We've enjoyed connecting and educating this week during . Thanks to all in-person and livestream attendees!
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Global Genes 16 h
Collaboration is key for the community. Kimberly Haugstad shares our approach in this podcast.
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Global Genes 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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Global Genes proslijedio/la je tweet
Stephanie Fischer 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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Global Genes 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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Global Genes 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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Global Genes 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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Global Genes 4. velj
"We cannot treat what we do not diagnose." - Khrystal K. Davis, JD, Founder, Texas Rare Alliance
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Global Genes 4. velj
Have a question for this panel? Ask now.
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Global Genes 4. velj
Quick Poll: What are some barriers that keep you from reaching more patients? Answer here:
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Global Genes 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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Global Genes 4. velj
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Global Genes 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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Global Genes 4. velj
Remember to define your research goals when embarking on a natural history study.
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Global Genes 4. velj
Quick Poll: Are there clinical guidelines for the disease that your organization focuses on? Answer here
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Global Genes 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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Global Genes 4. velj
Thank you for joining us!
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Global Genes 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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Global Genes 4. velj
Q&A time with Dr. Pullen and Maria. Ask here:
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Global Genes 4. velj
The is willing to hear the patient voice so don't be afraid to ask for help.
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