Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out


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

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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

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

Saturday, September 14, 2013

MEBO talks to US President on NORD Conference Call

As an Organization Member of the National Organization for Rare Disorders (NORD), MEBO was invited to a

Conference call with the President of the United States, Barack Obama, and the Health and Human Services Secretary, Kathleen Sebelius

on Monday, September 16, at 1:40pm EDT to discuss the October launch of the Health Insurance Marketplace. Of course, as members of NORD, our focus will be on how this will affect Rare Disorders, including TMAU and other body and breath odor conditions. Our very own MEBO Community Outreach Director, Cheryl Fields, MBA, PhD (ABD), Human Resources Consultant, was granted a reserved space to join the call to represent our cause.

Our entire international community is most grateful to Cheryl for stepping up to represent us. We look forward to hearing her account of this experience, which will be posted in this blog. The MEBO goal to bring our cause to our political leaders has reached the highest levels in the US government, and I hope that good relationships can be established with this opportunity for future communications. We have reached great heights as an organized community with this opportunity, and we thank NORD for making it happen for us.

Cheryl, remember that you have our whole community praying and thinking of you on Monday afternoon, in camaraderie and support. All the best to you!


María de la Torre
Founder and Executive Director

A Public Charity (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

A EURORDIS and NORD Member Organization 


Anonymous said...

woe . will this be recordable ? if so I hope to view it at some point . Just a screen capture of the Pres would be pretty great for the cause !


Sep 14, 2013, 7:25:00 PM
Maria de la Torre said...

It would be great if NORD would record it, but I don't know if it would be possible. Otherwise, Cheryl will give us her account of the experience. It's great that NORD has brought a spotlight to Rare Diseases, and that we get an opportunity to say our piece. One drop at a time in the bucket will eventually fill it up. This one should be a big drop.

Sep 14, 2013, 7:53:00 PM
Pete said...

great stuff

Sep 16, 2013, 9:06:00 AM
Post a Comment