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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, July 23, 2012

Trimethylaminuria community group on RareConnect website


TMAU pages on RareConnect website
The RareConnect website is a partnership of NORD, a U.S. National Organization for Rare Disorders, and EURORDIS, a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases. The purpose of this website is to connect rare disease patients globally. The website itself is a place where sufferers, sufferer organizations, and those related can join to communicate, as well as being a one-stop place to learn about the disorders.

We are happy to say that trimethylaminuria (TMAU) is one of the disorders that has a place in this site for our international community. Trimethylaminuria (TMAU) pages on Rare Connect website.

All sufferers and sufferer organizations are welcome to register and become a member of this site that offers a wide web of connections with rare disease sufferers throughout the world, language services, news on community services, political connections and endeavors, special projects, and much more. You may choose whichever language you are most comfortable with, such as German, English, Spanish, French, or Italian to register. Please feel free to write your personal testimonial if you like, under the "Call for stories" article written by the RareConnect team. Stories can be submitted anonymously to

Please note that this is not a MEBO Research site, though MEBO is a NORD Organization Member and a RareConnect member, and all the currently registered patient groups look forward to uniting with the rest of our international community's sufferer organizations, forums, and individuals wishing to get together under the hospice of these two great organizations through RareConnect. So please do register individually or under your organization's name.

from around the world!


María de la Torre
Founder and Executive Director

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