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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

MEBO TMAU Videos

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

Sunday, September 6, 2015

Belgian TV company wants TMAU volunteer

A Belgian TV production company, Sputnik Media, wishes to add a TMAU patient to a TV program they are making. Details below from Flo of Sputnik Media

Hello everybody,

My name is Flo and I am an editor at the Belgian television production company Sputnik Media.

Currently, we are working on a new documentary. The documentary is kind of a reaction against the aesthetic perfectionism that is prevalent in our society. We want to eliminate prejudices by informing people about existing conditions and we want to make people aware of their often wrong impressions about people based on their appearance.

Therefore, our host (a well-known Belgian public figure) will conduct an interesting experiment: although she is quite concerned about her looks and appearance, she won't clean herself, won't wash her hair and body, won't use any cosmetics etc during a whole month.

During that month, she will also meet some very interesting people with intriguing stories. Like that, we want to inform people and try to reduce the erroneous preconceptions about certain conditions.

Therefore, we would love to arrange a meeting between our host and someone with TMAU, if possible, someone from (or near) Belgium... (Nonetheless: we are interested in EVERY story!)

Do you want to share your story with us? Do you want to help us by introducing us to others or to TMAU specialists? Or do you have any questions, doubts...? Please don't hesitate to contact me: I will be happy to help you!

Kind regards and I wish all of you all the best,

Flo
flo@sputnik.be

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A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

Popular show in UK called undateables on channel 4 is also looking for someone.

Sep 7, 2015, 12:23:00 AM
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