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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

Tuesday, April 18, 2017

Webinar: Causes of Variability in TMA Odor Intensity


"Causes of Variabaility in TMA Odor Intensity"

by Yiran Guo, PhD.
George Preti, PhD.

This is the 2nd part (George Preti, PhD) of a joint webinar by Yiran Guo, PhD, and George Preti, PhD, of Monell Chemical Senses Center in Philadelphia", sponsored by RareConnect. In this webinar, they discuss the latest overview of TMAU, including the finding of the results of their genetic study on TMAU, "Genetic analysis of impaired trimethylamine metabolism using whole exome sequencing."

This study indicates that 3 genes, PYROXD2, CP, and TXNDC2, in addition to the commonly known FMO3 gene contribute to Primary TMAU. This study was funded with $26,000 raised by sufferers of TMAU. These results suggest that there is still much more to be researched to discover all the genetic mutation, and their interactions with each other, that can contribute to Primary TMAU symptoms.

The first part of this webinar by Dr. Yiran Guo had technical problems and is being worked on by the RareConnect staff.

We thank Marta Campabadal with Eurordis / RareConnect for providing the platform for this webinar to take place.

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A EURORDIS and NORD Member Organization


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