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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

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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

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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

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

Tuesday, February 12, 2013

Ranking of film visits, The Boy Who Smells Like Fish


RAISING AWARENESS
WITH RENOWNED ACTORS!


To purchase tickets, click here

As an international community, as we continue our efforts to raise awareness, we assertively continue to support the film, The Boy Who Smells Like Fish, as it competes in the Miami International Film Festival (MIFF) on March 2nd.

UPDATE:
I know we can easily place our film as the most visited. Please be a part of this.
the most visited film (online) is “After Lucia,” and the second-most visited is “The Boy Who Smells Like Fish, with EENIE MEENIE MINEY MOE trailing closely behind.” Let's make The Boy the NUMBER 1! The way to vote for our film to simply visit the page, and that counts as a visit. Ideally, if you would then add it to your calendar, click on “Like,” and tweet it if you can, that would be even better. You can share it with friends (other sufferers?) on facebook, or email your family and friends. By doing all this, we may very well be helping this film in the competition, and most importantly, we will call attention to the plight of all sufferers.

If you would like to see the ranking of the film, and how it is in relation to the other top films, you can visit, http://miami.festivalgenius.com/2013/films/theboywhosmellslikefish_analeinecalymayor_miami2013, and click on “Olympia Theater at the Gusman Center for the Performing Arts” venue.

I know we can easily place our film as the most visited. Please be a part of this.
Thanks for being a proactive member of our community,

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

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