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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, September 19, 2018

MEBO chat with NIH ORDR office :details to follow

Details will follow soon of :
MEBO web conference with NIH ORDR dept team.
Tue 18th Sept

Info given after the chat :

Thank you for speaking with us earlier today. In follow-up to our conversation, here are links to some of the programs and resources we spoke about.

RDCRN (Rare Disease Clinical Research Network) Funding Opportunity Announcement -

Toolkit for Patient Focused Therapy Development -

R13 Grants (Support for Conferences and Scientific Meetings) -

All of Us Research Program -

Registries Program (RaDaR):

Additional registry information outside of NIH:

NORD (National Organization Rare Disease) -
Sanford CoRDS (Coordination of Rare Diseases at Sanford) -

Additional info given :

Thank you for the time to talk to us about TMAU yesterday.

In terms of drug development for TMAU, given the available knowledge of the TMA metabolism, it seems possible that small molecules could be developed to modulate TMA levels.

The attached PDF entitled TMA inhibitor is an example that I found.

You may have seen this, but It turns out that the same approach has implications for treating heart disease, so there is already drug development ongoing

There may be other labs or companies working in the same area, so this is not intended to be a complete list.

Along the same lines, another possible therapeutic strategy that is worth considering would be breaking down or trapping TMA.

While gene therapy to the liver is theoretically possible, it seems unlikely at the moment given the serious risks of gene therapy, and since TMAU is not a life threatening disease.

An alternative that could be considered is using genetically modified microorganisms in the gut to do the same things.

These links discuss some examples of that strategy.

Here are two companies working in this area that I know of;
there may well be more

As I mentioned yesterday, this information is not an endorsement of any company; just some ideas for you to consider and discuss with your scientific and medical advisors.

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