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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

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

Monday, April 6, 2015

Be a participant of the MEBO Annual Meetup wherever you live

See Embassy Suites Orlando pics
Memphis Meetup/Conf 2013
Washington DC Meetup/Conf 2011
Miami Beach Meetup/Conf 2012
As I have mentioned in previous posts, this year's meetup and conference will be more informal, since some of our scientists are involved in research, designing research, and/or the pursuit of research funding. We have received so much information from our experts for so many years, and many presentations have been shown at previous MEBO Annual Meetups and Conferences, that we really should re-visit them and discuss them to better understand them and incorporate them in our lives.

The main focus for this year's meetup is to re-open and discuss much of the information presented in previous conferences, with a great deal of emphasis on our whole international community's participation. Group participation is strongly encouraged. Unfortunately, since our community is spread out around the world, not everyone can attend the meetup and conference, so therefore, I really hope that each of you send me information that has been most helpful to you, whether it is a professional paper, handouts from our experts, excerpts from an interview of an expert or a webinar, an article, powerpoint presentation, the MEBO Raising Awareness Campaign, or a post in the MEBO Blog, etc. I will try to incorporate the information you provide in our group discussions.

MEBO Annual Meetups & Conference
Scroll down on link to see all posts
At this time, the primary topics to be discussed are,

After the meetup, I will be posting about it in this blog so that those who could not attend can get some information about what was said, and the more people that participate in sending me information, the more we will all benefit in the long run. If you have something that has been particularly helpful to you in your efforts to understand your condition and how to best control it, please share it with me in an email at maria.delatorre@meboresearch.org, or give us the link in a Comment on this post.

Be a participant of the MEBO Annual Meetup/Conference in Orlando 2015, NO MATTER WHAT PART OF THE WORLD YOU LIVE IN! We are one community, and unfortunately, there is no way we can hold a meetup that every sufferer around the world could attend. Geographic locations and language barriers are a significant obstacle that prevents us all from uniting physically, but thankfully, we can do so online through the MEBO sites.

Thanking everyone in advance,

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)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

1 comments:

Anne said...

The conference sounds like it's going to be very informative! Is there any way that the conference can be streamed live on U-Stream or something for those unable to attend in person?

Apr 27, 2015, 1:10:00 PM
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