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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

Popular Posts (last 30 days)

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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

Saturday, March 1, 2014

US Senate Passes bipartisan Resolution for Rare Disease Day

On February 28, 2014 in U.S. Senator Brown's (D-OH) newsroom press release website, it is announced that a bipartisan resolution led by Senator Sherrod Brown and John Barrasso (R-WY) was passed in Washington, D.C., that would recognize the last day of February as "National Rare Disease Day," "to raise awareness of, and provide support for, the 30 million Americans living with a rare and potentially life-threatening disease or disorder.

Every day 30 million Americans, including too many children, have to live with life-limiting and sometimes life-threatening rare diseases," Brown said. "National Rare Disease Day is an opportunity for Congress to bring attention to these brave Americans, increase awareness about rare diseases, and help us understand the need for advances that can lead to prevention, effective treatments, and cures."

We are most grateful to Senators Brown and Barrasso for showcasing our cause.

We are also most grateful for the fine work done by the National Organization for Rare Disorders (NORD) and EURORDIS, The Voice of Rare Disease Patients in Europe, for representing all its rare disease member organization, including MEBO, and for spearheading the annual Rare Disease Day events around the world. We are very excited and proud to be a part of this movement.

Everyone is encouraged to register in the RareConnect website, Trimethylaminuria (TMAU) Community. Of particular interest is their wealth of information found in their "Learn" section's Documents and Articles (see tabs). RareConnect is a partnership of EURORDIS and NORD in which many sufferers have found it beneficial to participate in. RareConnect has also sponsored the many webinars that our experts have volunteered to do for us, such as,
These webinars are filled with very valuable information for our community, to which we owe kuddos to RareConnect for making it available to us. Please support this movement by registering with RareConnect today.


María de la Torre
Founder and Executive Director

A Public Charity (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

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A EURORDIS and NORD Member Organization 


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