Idea : TMAU Awareness week ... every 6 months

notion of a TMAU AWARENESS WEEK every 6 months.

Most disorders have a yearly awareness week. TMAU would do well to have such a week, as it is possibly the most 'unknown' documented 'rare' disorder (I don't think it is rare. Severe TMAU1 may be, but transient cases might be 1%+ imho).

But why wait yearly ?
If you live to 80 you will see only 80 'rare disease' days.
In many countries political parties now have twice yearly conferences. This will be due to party member pressure, feeling yearly too long a gap, and they are right. A year is a long time for causes.

So it would be great if the TMAU community could arrange :
TMAU AWARENESS WEEK (every 6 months)
(in my opinion)

What would it involve ?
An ad campaign (funded by specific crowdfund campaigns).
Maybe lobbying politicians or getting a patron politician involved.
Perhaps test labs releasing latest test result stats.
Maybe someday a conference (like the 1999, 2002 conferences which were meant to be bi-annual, 2001 moved due to 9/11)

An example of a disorder awareness week (UK Downs Syndrome)

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By sysbodyodor

campaign, fecal body odor, fund raising, ideas, join in, patient advocacy, raising awareness

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