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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Friday, August 17, 2012

Please join the webinar sponsored by RareConnect, a EURORDIS & NORD Partnership

19th AUG
1pm UK/6pm EST

Click here to go to Eurordis - webinar room for TMAU/FMO3 webinars

Note : Use a nickname if concerned about name being shown. Webinars will be recorded.

As previously announced on August 9th in this blog, Series of FMO3/TMAU webinars from researchers and experts, RareConnect is sponsoring a TMAU & FMO3 Webinar series for us this coming Sunday, August 19th at 1:00pm EST (6:00pm UK time). Everyone is invited to attend.

RareConnect is a partnership project of EURORDIS and NORD, which provides a platform for rare disease patient organization to develop online communities across continents and languages. Therefore, this webinar is not a project of any particular body/breath malodor organization or forum, but rather, we are all invited by RareConnect to come together as a community with common interests and concerns to tell the world our story.

If you would like to present your questions in advance, you may do so in the RareConnect site, or you can just join the webinar by going to the Eurordis Rare Connect webinar room for the TMAU/FMO3 webinar.

    This first webinar is Rob’s debut to our international community, in which he will tell us about EURORDIS and NORD, and all the wonderful tools and opportunities it provides us to help us with our cause. As part of the Communication team, Robert Pleticha is an Online Patient Communities Manager at EURORDIS, and he will be describing the International TMAU Community on RareConnect.

    "Is it possible to use the media effectively in malodour sufferers' struggle for human right?" As a community leader, Karen has spearheaded the International Raising Awareness Campaign in the UK medical system, work with UK DUETs, NHS Evidence, National Institute for Health and Clinical Excellence, to publish 10 body odor related uncertainties / questions, now found in the Library of NHS UK database, about the effects of treatment for TMAU. She has authored an article, My body produces an offensively pungent chemical, published in InnovAiT 2012; doi: 10.1093/innovait/ins093, of the Oxford Journals on May 16, 2012.

Let’s give Rob and Karen our warm welcoming support and our appreciation for making accessible to us this platform to achieve our aims, to promote research and to provide us with a network that could potentially assist us in achieving our goal.

Hope to see as many visitors as possible in this first event.


María de la Torre
Founder and Executive Director

A Public Charity
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Anonymous said...

maybe there should be a "will you be joining in?" sidebar to show how many will be logging in .

Aug 17, 2012, 9:58:00 PM
Anonymous said...

The last webinar we had on microbes and us gave us the opportunity to hear a lecture about microbes. But the best part was being able to bring it to a sufferer's primary concern with the Q&A session where sufferers asked many pertinent questions that Irene answered well.

Aug 18, 2012, 9:47:00 AM
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