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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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Blog Archive

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, December 27, 2019

Ubiome MEBO study : Irene posts an update

Professor Irene Gabashvili, long-time MEBO helper and founder of Aurametrix, has written another update about the UBIOME-MEBO microbiome research study, which Irene oversaw.

Here are the 2 latest updates on Irene's Aurametrix blog.   

About the Ubiome-MEBO study
Ubiome kindly gave MEBO a grant in the form of free microbiome testing kits to test our community. Analysis of the results is still ongoing by Irene. 

Ubiome closed this year
Unfortunately Ubiome closed this year after venturing into the USA 'Dr-order' market. Originally it was only a 'consumer market' test. An issue arose with the FDA over its billing practices.
Forbes article

Ubiome alternatives ?
Some say Viome is a similar test to Ubiome's. Some say it includes testing for TMA (this is likely an estimate from guessing which bacteria produce TMA). Nothing can be suggested with total confidence in the blog. Probably forum posters will know more.

Ubiome patents bought recently
It seems Psomagen bought the Ubiome patents this month.
news : Patents bought 

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A EURORDIS and NORD Member Organization


Anonymous said...

Can you guys please look into Chan Zuckerberg Initiative.
They support rare diseases so maybe they might give us a grant?

Jan 2, 2020, 10:36:00 AM
Anonymous said...

Jan 2, 2020, 10:37:00 AM
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