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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

Scroll down and select country

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

Monday, November 17, 2008

update on email request to DNA labs about Trimethylaminuria DNA test

Regarding the email sent to DNA labs as mentioned in this post, so far we have had 3 replies. One negative, one unclear (but presumably not so hopeful), and one quite positive.

Thank you for the suggestion and information. We will seriously consider adding this test (as a DNA test).

Molecular Genetics Laboratory
Department of Pathology
All Children's Hospital
801 Sixth St South
St Petersburg, FL 33701
It's difficult to know what to do next. for instance a 'campaign' may discourage them.

There was also a less understandable reply from UCLA
Thanks for writing. We are well aware of this condition and have seen patients affected with it in our UCLA Medical Genetics Clinic. Regarding testing, at this point our Orphan Disease Laboratory is only set up to test for known familial mutations; we cannot do full-gene analysis. Requisition forms are available on our website for any of your contacts who wish to be tested.

Divisions of Medical Genetics
and Molecular Pathology
Departments of Path. & Lab. Medicine,
Pediatrics, and Human Genetics
UCLA School of Medicine
Los Angeles, CA 90095-1732
Anyone who finds out any further information about this subject, we would be most grateful to hear about it.


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