|
Global Genes
@
GlobalGenes
We're global!
|
|
Leading patient advocacy organization working to eliminate the challenges of rare disease faced by 400 million people worldwide. #CareAboutRARE #RareDisease
|
|
|
23.633
Tweetovi
|
7.741
Pratim
|
26.188
Osobe koje vas prate
|
| Tweetovi |
|
Global Genes
@GlobalGenes
|
11 h |
|
We've enjoyed connecting and educating this week during #DataDIY. Thanks to all in-person and livestream attendees! #CareAboutRare #raredisease dev-global-genes.pantheonsite.io/data-diy/
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
16 h |
|
Collaboration is key for the #raredisease community. Kimberly Haugstad shares our approach in this podcast. michellemarketingstrategies.com/kimberly-haugs…
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Thank you to everyone who has followed along with the #DataDIY series. You can find resources for all of the workshops here: globalgenes.org/data-diy/
|
||
|
|
||
| Global Genes proslijedio/la je tweet | ||
|
Stephanie Fischer
@RarePOV
|
4. velj |
|
Regarding including minorities at much higher rates in #clinicaltrials for #rarediseases, @ichristianr_ of @globalgenes says “Good science requires it. Good treatments require it.” #DataDIY 👏👏👏
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
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 pic.twitter.com/DkBmdM5cbc
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
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. #DataDIY #RareDisease
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
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 #DataDIY #RareDisease
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
"We cannot treat what we do not diagnose." - Khrystal K. Davis, JD, Founder, Texas Rare Alliance #DataDIY #RareDisease
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Quick Poll: What are some barriers that keep you from reaching more patients? Answer here: datadiy4.cnf.io/sessions/jwpp/… #DataDIY #RareDisease
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Now for a panel on expanding your engagement to underserved populations with Dr. Horn (LHC BioSolutions), Linda Wade and Jordan Shumway (@SickleCellMTF), Khrystal Davis (Texas Rare Alliance), and Robyn Carlyle (@TXCHW1). #DataDIY #RareDisease pic.twitter.com/RibLMicIDQ
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Have questions for our panel? Ask now: datadiy4.cnf.io/sessions/t4y7/…
#DataDIY #RareDisease pic.twitter.com/6ZlThcQV3A
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
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. #DataDIY #RareDisease
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Remember to define your research goals when embarking on a natural history study. #DataDIY #RareDisease pic.twitter.com/fJKALBqkmw
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Quick Poll: Are there clinical guidelines for the disease that your organization focuses on? Answer here datadiy4.cnf.io/sessions/t4y7/…
#DataDIY #RareDisease
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Establishing a primary database with a positive effect of having all protocols listed on clincialtrials.gov, allowing researchers and patient families to get in contact with appropriate resources. #DataDIY #RareDisease pic.twitter.com/shRx1NRmos
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Thank you for joining us!
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
Our next panel on clinical guidelines for data features Paige Nues of @rettsyndrome and Dr. Suter and Dr. Glaze of @bcmhouston. #DataDIY #RareDisease pic.twitter.com/4x22ZvLtUk
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
|
||
|
|
||
|
Global Genes
@GlobalGenes
|
4. velj |
|
The @US_FDA is willing to hear the patient voice so don't be afraid to ask for help. #DataDIY #RareDisease pic.twitter.com/jDr0CaTVva
|
||
|
|
||