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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 :
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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

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to join : go to
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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 8, 2013

Abuse, homelessness, and Judgement, living with (TMAU)

Visit Lisa's support group,

testimonial of the inhumane treatment she has received by the very people who are supposed to be helping the homeless
Many in our community have gotten to know Lisa Marie, who shared her first video with us in September 2012, First hand experience with TMAU video, Lisa Marie. Lisa is the Founder of Silas Garrison Fisher, Inc., an organization dedicated to bringing about public awareness of rare medical disorders.

Lisa is one of the strongest human beings I have ever met, as she demonstrates her courage by sharing her second video, Abuse, homelessness, and Judgement, living with (TMAU) Trimethylaminuria. This heart-wrenching testimonial of the inhumane treatment she has received by the very people who are supposed to be helping the homeless, is nothing less than a cry (a scream) to tell the world that programs to raise awareness are essential to preserve the basic human right to dignity of persons who suffer from a medical condition!

In most homeless shelters in the United States, a person who seeks shelter is obligated to shower to not smell in order to be accepted. Even if a person claims to have done so, but still smells, and in Lisa's case, even as she explains that she has a medical condition, she was bullied and discriminated against, stripping away at her human dignity, as she describes in her video above.

a cry for sufferers to "come out of hiding," to be part of the solution!
Not only is this a call for all sufferers to stand up and participate in raising awareness campaigns around the world, but it is also a call for sufferers to support research to develop affordable treatment to control symptoms! If we wait for pharmaceutical companies to fund research for us, the cost of the therapeutic will be so high that it will be out of reach to sufferers, especially to those who are underemployed or unemployed.

This is a cry for sufferers to "come out of hiding," to be part of the solution!

Thank you Lisa for your courage to be a part of the solution.


María de la Torre
Founder and Executive Director

A Public Charity
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