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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO Karen
at UK Findacure conf 2020

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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

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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

Friday, February 24, 2012

MEBO's table exhibit at Rare Disease Day at NIH

We are most grateful to Cheryl Fields for her very hard work in contacting many resources in preparation for the Rare Disease Day events that are to be held in Washington DC on February 29th (in only 5 days). Cheryl will be setting up and operating a table for MEBO Research in this event, and is hoping many people in our community go visit her there.

Cheryl received the email instructions below from the Senior Health Scientist Administrator of the Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS), NIH , for table exhibitors at Rare Disease Day at NIH. For those attending, here is a copy of this email so that you will know where Cheryl will be:

When you arrive at the NIH Clinical Center please look for the Office of Rare Diseases Research table. We will have a listing of the table assignments. The tables will be arranged in the South Lobby of the Clinical Center (Building 10). The NIH Campus Shuttle has a stop on the south side of the building. If you arrive at the North Lobby, there will be directional signs directing you to Masur Auditorium. The South Lobby is around the corner and down the hall from Masur. The tables will be ready for you by 7:30 am. Please allow sufficient time in the Visitors Gateway Center to go through security. The tables will be approximately 3’ x 6’ and there will be two chairs with each table. The exhibits should stay up, when possible, through at least the afternoon break. You should take the exhibits down by 6 pm.

While we don’t require you to stay with the exhibits all day, we do hope that you maintain a presence there during the breaks (morning, afternoon, and lunch). We are looking into arranging monitors for the lobby so that people can watch the live video stream while still at the tables and posters.

Senior Health Scientist Administrator
Office of Rare Diseases Research
National Institutes of Health / NCATS

Our most sincere gratitude goes out to Cheryl for her hard work in representing MEBO Research in such a powerful way by not only doing the video on Trimethylaminuria, but also in setting up a table at this event.


María de la Torre
Founder and Executive Director

A Public Charity
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aj.mcclay said...

So pleased to see someone doing this, great attitude cheryl. Im really proud!!

Feb 25, 2012, 4:34:00 PM
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