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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

Popular Posts (last 30 days)

Upcoming get-togethers

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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

Saturday, October 5, 2019

MALODOUR RESEARCH UK : (New Website and Campaign)

Malodour Research UK. (website)
A UK based very pro-active Patient Advocacy group.
Includes a monthly subscription fund to raise funding for research.

A community member has created a group who have created the pro-active group MALODOUR RESEARCH UK.
The main aim is to take the community to the next stage of creating positive changes for Malodour condition people.
The website was launched this week :
It seems to have been created around a UK-based whatsapp group.

Although it is UK based, it will help all Malodour people worldwide, as it's main aim is research.
Other pro-active help may include :
Developing relations with politicians to create political change.
Raising Awareness.
And much more.

Monthly Subscription Fund 
It includes the option to join a £20 a month monthly subscription research fund.
webpage here )
( more about the fund )

Early days & Pioneers
Due to the taboo of malodour conditions, not much impact has been made on research or awareness since 'TMAU' was first 'documented' in 1970.
It may take a while for MALODOUR RESEARCH UK to be a known trusted brand.
Readers of the 3 main forums should be aware of some of the history of it's founding, and a trusted respected forum member makes most of the announcements in the forums now.
So of course it will take a while to get things in context, but MEBO has high hopes and welcomes this new group (from what we know).

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A EURORDIS and NORD Member Organization


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