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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

Saturday, June 23, 2012

Mesage from Maria about Friday at the Miami meetup

Hi everyone,

We had out first day of the meetup which entailed our long journey from distant places, such as Asia, Western US, Eastern US and Caribbean. Unfortunately, it was pouring down torrential rain and Collins Avenue was flooded up to above our ankles. But did we let that knock us down? NO WAY! Through personal experience we knew that when we're dealt lemons, make lemonade, so we did!

We went downstairs and ordered a delicious dinner and had it brought up to our suite, and had our own private party! We talked and shared stories, and bonded like old friends do, even the new people were deeply moved with the closeness and camaraderie.

At about midnight some who had taken long flights called it a night, but 4 of us remained. So, we saw that it stopped raining, and we headed to the beach. Just as we were getting within feet from the water, it started to rain. Oh what the heck, we weren't going to let a nice warm rain stop us so, a couple of us decided to go into the water.

Did we stop there??? Na. We decided to walk in the rain, which was now a drizzle all the way from 17th Street to the southern part of South Beach. You would think it was dead because of the rain, but no. It was alive and kicking with cars cruising up and down Ocean Drive, and music coming from each establishment across the street, and escaping into the seas.

We had a great time, and made it back to the hotel by 2am. Tomorrow will be a big day with our breakfast at the Dorchester Hotel on Collins Avenue and 18th street at 10 am. Then at noon, we start the serious part of the meetup - the Conference. This will be held at the Dorchester Hotel, where we are first having breakfast, and then our conference in Suite 151. It's a lovely place, a full one bedroom apartment with a full kitchen, separate dining room, and very spacious living room where our tech will set a a full display of electronic equipment for our presentations.

I hope everyone that can drive down will join us! If you have any questions please call me at 786-228-6880. I wish everyone could share this special moment with us. Just show up anytime, that's OK.


María de la Torre
Founder and Executive Director

A Public Charity
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