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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov
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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

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Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

TMAU Movie


THE BOY WHO
SMELLS LIKE FISH

Movie also called,
TREADING WATER
See trailer'
Winner of Golden Trailer Award 2013

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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, November 10, 2020

Survey for potential TMAU therapeutic research database

Click on icon for full paper
https://forms.gle/vem2TjepKobYZPBu8


The aim of this Survey is to collect information to create a database that may be used for future research of a TMAU therapeutic. Everyone around the world in the MEBO community, RareConnect Trimethylamine community, and anyone who has been diagnosed with Trimethylaminuria (TMAU) or suffer from uncontrollable odor conditions yet to be diagnosed are welcome to submit their answers to this Survey.

Your personal information will be kept confidential throughout the study, and the researcher team will only receive a MEBO ID Number that will be assigned to you. In the event that another researcher with another research study is looking for participants, your answers in this survey will not be disclosed without your prior stated consent and permission.

This survey is the work of MEBO RESEARCH, a patient advocacy 501(c)(3) Public Charity registered in the State of Florida, and a Not For Profit, Limited By Guarantee Company registered in England and Wales.

Thank you for your contribution to this initiative.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
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A EURORDIS and NORD Member Organization

posted by Maria de la Torre on 11/10/2020
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1 comments:

Anonymous said...

is this good news for us:


Breakthrough in studying the enzyme that ultimately produces fish odor syndrome -- ScienceDaily
https://www.sciencedaily.com/releases/2020/11/201123112453.htm

Nov 29, 2020, 12:29:00 AM
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