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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

Tuesday, January 31, 2017

Support the MEBO Mission : RESEARCH




You can be involved without leaving your home!

As a registered not-for-Profit company in England and Wales since 2009, and a registered Public Charity in the United States since 2010, MEBO has done its best to raise awareness by being a participant, one way or another, in most of the government and private entities that have published information of TMAU, such as,

1. Organization Member of NORD, National Organization of Rare Disorders in the United States

2. MEBO Research UK is an Organization Member of EURORDIS, The Voice of Rare Disease Patients in Europe

3. RARE CONNECT: Eurordis is an "Initiative Connecting Rare Disease Patients Globally". All sufferers around the world are welcome to join Trimethylaminuria Community of RareConnect. Some moderators of this site are MEBO Directors.

4. ORPHANET : MEBO Research, UK

Orphanet has a link to the UK Medical Research Council funded (£358,000 GBP, equivalent to 422K/Euros or 552K/USD) research project performed by Dr. Elizabeth Shephard for a "Therapy for the body and Breath malodour disorder Trimethylaminuria (TMAU).


If MEBO directors in the US and the UK have been able to accomplish all this and more in only 8 years, imagine how much we could accomplish if more sufferers participated on the Rare Disease Day projects and events.
In addition to providing sufferers with the opportunity to do the MEBO TMAU Urine Test, MEBO has also supported research projects, such as the pre-clinical drug development for TMAU performed by Dr. Elizabeth Shephard as indicated in the Research Councils UK website, noting that, "Patient group MEBO [will have access] to the benefits of this research. (Click on the "Outcome" tab).

As promised in the MEBO Mission Statement, MEBO is not only focused on TMAU research and treatment, but is also very committed to the pursuit of research to identify other forms of odor conditions. Therefore, the MEBO Metabolomic Profiling Pilot Study was launched in Edmonton, Canada with Dr. David Wishart (PhD Yale, 1991) at the Wishart Lab, University of Alberta. It is a registered research project with the, Trial NCT02683876. (See updates.)

Click to see Info Pack
If MEBO directors in the US and the UK have been able to accomplish all this and more in only 8 years, imagine how much we could accomplish if more sufferers participated on the Rare Disease Day projects and events. Please refer to the,

Rare Disease Day
Patient Involvement : Research
28 February 2017.


María de la Torre
Founder and Executive Director

A Public Charity
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


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