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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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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, July 8, 2014

RareConnect sponsored Webinar Update: Exploratory Breath Study

Menssana Exploratory Breath Study



RareConnect sponsored Webinar

DATE CHANGED FROM: July 11, 2014
NEW DATE: Thursday, JULY 17, 2014
TIME: 2:00pm Eastern Daylight Time (EDT)
See The World Clock - Time Zones

LINK TO ACCESS THE WEBINAR https://eurordis.adobeconnect.com/rare_disease_communities/
Enter as guest, no password required.

Topic of Discussion:
The exploratory breath study and general initiatives of the Menssana Research Team with Michael Phillips MD, FACP, FRCP Founder & CEO Menssana Research and other staff.

Click icon
for blog posts on study

In sticking with MEBO RESEARCH'S MISSION, “to initiate research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis, including, but not limited to, Trimethylaminuria”, in mid 2012 MEBO partnered with Dr. Michael Phillips, MD, PACP, Professor of Clinical Medicine at New York Medical College, Valhalla, New York, an expert in breath testing, to offer breath testing to our community - to explore biomarkers for body odor and halitosis. MEBO’s primary role was to facilitate testing with patients to make testing available to communities where there was enough demand. There were many hurdles including significant cost suffered by MEBO in shipping the BCA instrument; however, we are happy to say there were 30 participants that traveled to Chicago, Miami, New York, and London. Each participant received his or her testing results shortly after testing, showing over 200+ compounds. We thank each participant for their tireless efforts in the breath testing collection process. We achieved the minimal amount of patients required for a small study of the aggregate test results...(See original post in this blog.)

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
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4 comments:

Anonymous said...

will this be uploaded to youtube later ?

Jul 23, 2014, 5:26:00 AM
Anonymous said...

Is there an offline account of the webinar available for viewing?


Thanks in advance.

Jul 27, 2014, 6:33:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

Not yet. I'll look into it.

Aug 4, 2014, 6:53:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

Here is a link to Dr. Phillips' webinar sponsored by RareConnect, "TMAU Community Webinar: Biomarkers for Body Odor and Halitosis".

http://youtu.be/5GYecFZR4Eg

Aug 22, 2014, 10:00:00 AM
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