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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

Tuesday, October 2, 2012

MEBO Research approved as an Organisation Member of EURORDIS

MEBO Research is proud to be a new Organisation Member of EURORDIS, The Voice of Rare Disease Patients in Europe. The Eurordis Board of Officers informed us that our application for associate membership was officially approved today, October 2nd, 2012. The following is a copy of the body of the acceptance letter received:

We are pleased to inform you that your application for associate membership of Eurordis was officially approved by the Board of Officers on October 2nd, 2012.

We would like to welcome you within Eurordis. We strongly believe that bringing together all patient associations will provide people with rare diseases with a strong and unique voice. With more than 500 direct member organisations, Eurordis is recognised and listened to as the European organisation specialised in the needs of patients with rare diseases.

As a member association, you will receive key information on a regular basis. We also encourage you to consult our website: and subscribe to our electronic newsletter directly on the site.

Please find attached the Eurordis member logo that you are invited to use on your communication material and website. We will send you by normal mail a welcome package.

Once again, we welcome you to Eurordis. Please do not hesitate to contact us if you need any further information.

Sincerely yours

Plateforme Maladies Rares
96, Rue Didot, 75014 Paris

It is an honor and a privilege to hold this membership, and we are most grateful to the Board for this great opportunity.


María de la Torre
Founder and Executive Director

A Public Charity
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A EURORDIS and NORD Member Organization


Anonymous said...

Congratulations you guys !!!

Oct 4, 2012, 1:50:00 PM
Brei said...

Hi I would like to know if I have tmau ppl say i smell all the time.. sulfur when I eat. I always have high blood pressure the doctors have to check me 2 or 3 times my breath smells fecal I'm am allergic the wheat and gluten also I have been told it's all in my head from 15 to now I'm 22

Feb 6, 2016, 8:36:00 PM
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