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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

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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

MEBO Private Facebook Group
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

Wednesday, January 25, 2012

CNN iReport: Please support Cheryl's CNN iReport vetting

Let's give Cheryl the opportunity to tell our story on CNN iReport by us telling CNN that we support the vetting of her show. Please show support for Cheryl's iReport: Rare Diseases Day (World Coverage) by going to, scroll to the bottom of Cheryl's story, and Click on "This belongs on CNN". Please ask family and friends to do the same.

There are various ways to show support, and in this case, a simple registering with CNN iReport and clicking on a tab to support this effort goes a long way. Your comments to CNN are also influential.

Cheryl has written to various organizations asking for support for her CNN iReport and for the Fifth International Rare Disease Day, organized by EURORDIS, Rare Disease Europe. She asks them to write a quote about TMAU patients and the social difficulties that may face TMAU victims. She may need our support as well in this effort in the near future, so please standby ready to tell your story when the time comes. It would be greatly appreciated!

IDEA: "A group that has a rare disease that makes it almost impossible for them to have a social life or find employment wants to be featured in the media and hopes CNN will air their story during Rare Diseases Day, in February 2012. The group would like 2-3 people to appear on tv, telling their stories about the discrimination and frustration they have endured, while having this rare disease, that affects about 1%-3% of the population. The majority of the patients are African American, and since February is National Black History month, the group may be able to kill two birds with one stone?"

The group hopes to gain exposure, acceptance, and who knows even job offers. Once CNN did a story on a man with severe facial disfigurements and before the show was over that man had folks calling into the CNN station offering him employment, medical treatments, and donations!

halitosis research

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body odor petition
MEBO Research


BSC said...

I Clicked the "This should be on CNN" button. Just needed to do a quick registration, which was anonymous.
Takes less than 1 min of your time.

Jan 26, 2012, 3:55:00 PM
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