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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Friday, February 26, 2010

TMAU Awareness Day : 28th February

tmau awareness daySunday is International Rare Diseases Day, and the good people at have taken the initiative to make it also a Trimethylaminura Awareness Day, including the option to donate to the NORD TMAU Fund. They are going to see how many they can get to donate to the fund and NORD will tell them the total. NORD does not disclose any personal information to, so they do not know who donates unless you wish to disclose to them. Any contribution is welcome, from $1 to as much as you like. The goal is to reach $30000 by October, in which case NORD will then make invitations for the money as a grant for research. Cheryl Marshall has recently written more about the day and fund in the yahoo TMAU forum

Every penny counts- 1's, 5's, 10's whatever one can contribute adds up-please do not be shy about giving what you can.
NORD will tally the total dollar amount-I' m sure they may even be able to count the number of people who contributed as well- I will ask them for both numbers.
Much like the regular donation NORD NEVER reveals the names of the donors-We NEVER know who donates unless they reveal themselves. That is why I tell people that if they are donating and they want me to follow with NORD to make their donations are received they must tell me so when I call NORD I will have a name to ask for. Again let me say we will never know who the donors are.
Donations are accepted ANYTIME - it would be nice if we could get a large total for the 28th but if someone is unable to donate on that day - not a problem - send it later in the week.


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