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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

Wednesday, August 24, 2016

Raising Awareness in India


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A EURORDIS and NORD Member Organization


Anonymous said...

I wish that any research labs that have a potential cure sitting around would offer it to this rare disease community in some fashion. Recently, I learned that the Cleveland Heart Lab has DMB formulations patented that would help the TMAU community, but chose not to use it just now. So, as they're sitting on a patent,
it may be hard for other researchers to use that knowledge for our benefit.

I know it's good manners to be patient and passive with research labs, but gosh darn it, I wonder if they are aware of the enormous need out there.

Aug 29, 2016, 6:20:00 PM
blogcontributor2 said...

Cleveland Clinic are working on a TMA blocker pill. We don't know how long it will take. It will be an over-the-counter pill made by P&G. They won't be using DMB as they will be using something stronger. DMB is a natural compound so can't be patented.

So you can be safe in knowing that work is going ahead on a tma-blocker pill and it will come to market as it is for heart disease protection.

Aug 29, 2016, 7:21:00 PM
Anonymous said...

Actually, there is a patent, not for DMB itself , but for the discovery that DMB will block the formation of TMAO. It is viewable online.

Aug 31, 2016, 1:48:00 AM
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