Probably the main way to connect with the potential community is being found in web searches (mainly google web searches) or via advertising.
Keyword searches for human malodor conditions
Knowing what words people use in searches is a best way to get the idea of how people use searches that may connect them to metabolic malodor, It used to be quite easy to do keyword searches (via the google keyword search tool), but now is much more difficult (the google tool is now for adwords accounts only).
Looking around for an alternative, I did manage to find another limited keyword tool (Uber Suggest).
Keyword popularity for words that may be to do with 'metabolic malodor.'
Number is the rough amount of web searches in Google USA per month
Halitosis 110,000
Body Odor 8,100
Bad Breath 33,100
Trimethylaminuria 6,600
TMAU 3,600
Fish odor syndrome 2,400
Comments :
From these keyword searches it seems the main malodor word is 'Halitosis'.
'Body Odor' search is surprisingly low.
'Trimethylaminuria' is the most common search to do with that condition ?
Conclusion
It seems we have a long way to go to raise awareness of the concept of systemic/metabolic malodor disorders, even probably among our own.
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