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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

Sunday, November 17, 2013

A Community United

Picture: Tres amigos,
by Ben Rimmer
On August 18, 2008, a post was published in this blog inviting sufferers to take part in the launching of our Raising Awareness Campaign. We united as an international community from many countries of the world to tell our first-hand accounts with the creation of our Anthology. We wrote essays, short stories, and poems. We also included quotes written by sufferers in forums with their consent.

This project forged a bond among the participants in our community. We embarked on this journey and we inspired each other as our respective "floodgates" were opened and the concealed was revealed. What a beautiful way to set in motion a campaign that blossomed and has continued to grow these past five years. This campaign has reached so many around the world, including national organizations, physicians, sufferers and their families.

Not everyone has been inspired to express themselves with the written word, some have drawn pictures and others sung songs in videos for the community to listen to. I would like to share with you a poem, which personifies how this project united our community. The first half of each verse was written by one sufferer, which inspired another sufferer to write the second half, and it then became the Mission Statement of this movement:

Mission Statement

Mission Statement
To gather the rejected into the fold engenders its cornerstone,
When the unloved is loved, a seed is planted and life begins,
When the undesirable feels desired, love's essence breaks through,
When beauty is tapped inside the uncomely, all beauty breaks loose,
To give joy to the sad cleanses the soul,
Companionship creates a refuge to blossom,
In comfort, mourning hastens by,
To seek and save the lost, a path is woven,
To bind the wounds of the hurting brings stillness and peace,
To heal the broken hearted morphs a new life,
To proclaim acceptance makes us one with the universe.

I hope that as a community, we maintain a high level of unity and enthusiasm to support and help each other through this experience and to work hard at making it possible for our children and grandchildren to lead happy lives.


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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