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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)

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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

Monday, January 28, 2013

TMAU webinar with George Preti, Paul Fennessey, and Danielle Reed

5th Webinar


Trimethylaminuria webinar 
Friday 1st February 5pm GMT (noon EST)
 Everyone Welcome

Invitation to 5th TMAU Webinar 
With guest speakers :
George Preti, Ph.D. (Monell Chemical Senses Center)
Paul Fennessey, Ph.D.(University of Colorado Health Sciences Center)
Danielle Reed, Ph.D. (Monell Chemical Senses Center)

Titles of slideshows :
Updates on genetics of trimethylaminuria (Danielle Reed)
TMAU :  evaluation of individuals with malodor problems (Preti, Fennessey, Reed)

We are delighted to announce the upcoming webinar which will feature 2 researchers who have been eminent in researching and raising awareness of TMAU for many years : George Preti Phd and Dr Paul Fennessey. We are also delighted to have as a guest speaker Danielle Reed Phd, a geneticist at Monell Chemical Senses Center who is currently doing research into TMAU with the small grant awarded by NORD which was raised by the community (Danielle Reed and George Preti, “Revisiting TMAU through exome sequencing,” 1-year grant from the National Organization for Rare Disorders and the Trimethylaminuria Foundation). Everyone is welcome to attend though only 50 places are available. Permission has kindly been granted for the webinar to be recorded and made public.

About George Preti : Monell page for George Preti
Pubmed abstract on TMAU

About Paul Fennessey : Dr Paul Fennessey detail
Pubmed abstract on TMAU

About Danielle Reed : Wikipedia entry for Danielle Reed
Monell webpage for Danielle Reed

Webinar technical details :
Webinar room is here : http://eurordis.emea.acrobat.com/rare_disease_communities/
No need to use your real name. No password needed. Sign in as 'guest' if you wish

The webinar is being provided by rareconnect.org, part of Eurordis
Visit the rareconnect.org trimethylaminuria community

1 comments:

Unknown said...

May i know when theyll do a webinar again? Or anyone for that marter

Jul 26, 2022, 12:09:00 AM
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