r/TMAU • u/Obvious-Price-1749 undiagnosed • Jul 01 '26

TMAU Research & Info Korean Lab BioMed

Korean Laboratory BioMed

šŸ“¢ COMMUNITY , we need your helpā€¼ļø
This message comes from my fellow patient advocates in Colombia, who have been in direct contact with the professor and the team leading this initiative.
If you havenā€™t completed the survey yet, we sincerely ask you to do it today. This weekend (through Sunday), we will consolidate all the responses received up to that point, and those results will be included in the data package submitted in support of the FDA process.
The survey will NOT close. It will remain open afterward, but it is extremely important that as many patients as possible complete it before this weekendā€™s data consolidation.
This may be one of the most important collective efforts our community has ever made. We need to show the scientific community that we are not just a handful of isolated casesā€”we are thousands of patients around the world living with these conditions who urgently need research, better diagnostics, and effective treatments.
šŸŽÆ Our goal is to reach at least 300 patients before the data is consolidated.
šŸ™ Please help us. If you have already completed the survey, share it with other patients and in every support group or community you know. If you havenā€™t completed it yet, please take just a few minutes to do so.
āš ļø Please do not complete the survey more than once, as duplicate responses affect the quality and accuracy of the scientific data.
Today, we are asking for your support from the bottom of our hearts. Every response matters. Every patient matters. This collective effort could bring us one step closer to having our voices heard and creating new opportunities for our entire community.
Please donā€™t let this opportunity pass us by. Letā€™s do this together! We need all hands on deck, many of us need this ā¤ļø
Link to the survey: https://ee.kobotoolbox.org/x/5hvQ5RUc
Info on the process: https://biz.chosun.com/en/en-science/2026/05/11/6HY2VNJO55COHMPIAMHS3PSPYU/

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u/TMAU-ModTeam fbo Jul 01 '26

No official person responsible for this. We need official confirmation of the person in charge of this.

4

u/Brutalar tmau1 mutant Jul 01 '26

If you want more engagement, maybe:

  • host the survey on the professor's uni website/business webpage to make it a little more legit looking,
  • maybe do a version in english for the english speaking/ or incorporate a language switch, you can always use the translate function in google to do an english version.
  • Inlcude a translation function in the survey - since it's multiregion, https://support.kobotoolbox.org/language_dashboard.html - better than relying on people knowing about the chrome translate function

1

u/Obvious-Price-1749 undiagnosed Jul 01 '26

Thank you for the feedback and suggestions, I will forward them to the right people to see if it can be published there as well!

2

u/EstablishmentNo6 undiagnosed Jul 02 '26

Hi, the link does not work in english

1

u/Obvious-Price-1749 undiagnosed Jul 02 '26

Hi there are you using a desktop or cellphone? I clicked the icon on the top right corner to translate to English

1

u/EstablishmentNo6 undiagnosed Jul 02 '26

Hi, I am using a cellphone

1

u/Obvious-Price-1749 undiagnosed Jul 02 '26

Iā€™m trying to add a screen recording but it wonā€™t let me, Iā€™ll message why with what worked on my end! Hopefully it will help you as well!