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

Friday, February 10, 2012

Rare Disease Day USA February 29, 2012

A few MEBO Board members have received an email from the National Organization for Rare Disorders (NORD) informing us of the events that are to be held on Rare Disease Day, February 29, 2012. This is the message they extend to our community:

Have You Made Your Plans for Rare Disease Day 2012 Yet?

On February 29th, Rare Disease Day Partners across the U.S. and around the world will be hosting events, sharing stories, and showing support in other ways. National events include the NIH Rare Disease Day symposium on February 29 and the FDA Patient Advocacy Day on March 1.

NORD has chartered a bus to take patient advocates to the FDA event on March 1. Seating is limited. Patient organization representatives wishing to reserve a seat on the bus should write to

Here's a brief wrap-up of other plans that have been shared to date through the Rare Disease Day US website.

As noted on a previous post in this blog, Fifth International Rare Disease Day by EURORDIS, this event is an international one celebrated throughout the world.

February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!

We hope you will have to opportunity to participate in any of these events. Have a great time if you do.

halitosis research

A Public Charity
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

body odor petition


Mary at LaL Solace said...

Thank you for supporting Rare Disease Day! My child passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary

Feb 22, 2012, 12:22:00 PM
Maria de la Torre said...

How tragic that you have lost your child to a rare genetic disease. I hope you find some solace in knowing that we are all united together to stand as a strong entity to promote research and find cures, one at a time if necessary.

Feb 22, 2012, 12:33:00 PM
Post a Comment