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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

Thursday, February 12, 2015

Rare diseaseTweetchat with NORD and ABC : 1pm ET 17th Feb

Click for full details 
Tweetchat with NORD and ABC 
Chat about rare diseases
!7th Feb at 1pm ET
Use your twitter account to tweet, or just read the tweets
Send tweets to  @Rarediseases and @RareDayUS

Guests :
Dr. Richard Besser, Chief of the ABC News Medical/Health Unit
Marsha Lanes, MS, CGC, NORD’s Genetic Counselor & Medical Educator

With the annual Rare Disease Day fast approaching on 28 Feb, the popular weekly ABC news health 'tweetchat' show is having a tweetchat about rare diseases on 17th Feb. 

Since trimethylaminuria is regarded as a 'rare disease' (perhaps due to gross underestimates), then presumably TMAU people are free to join the ABC/NORD tweetchat. 

More details can he found in the NORD press release : Link 

Tweetchat Coordinates
When: Tuesday, February 17, 2015: 1:00-2:00 p.m. ET
Tweetchat Hashtag: #abcDRBchat 
Tweetchat Moderator: @abcdrbchat 
Dr. Richard Besser: @DrRichardBesser
NORD: @Rarediseases and @RareDayUS


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