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

Thursday, February 8, 2018

Represent on Rare Disease Day 28 FEB 2018!


It's that time of year again, when sufferers of rare diseases worldwide come together to raise awareness throughout the world. This annual event is intended to call the attention of politicians who can create laws and modify laws to make it possible for persons with rare diseases to get treatment sooner than later. It also calls the attention of National Institutes of Health systems of many countries around the world by raising awareness to the fact that there is a great need for research grants in order to be able to carry out research into rare diseases, including TMAU and other yet-to-be-discovered uncontrollable odor conditions.

Each sufferer around the world can participate in whatever capacity he or she would like, or in as many events as possible. Below are a few of ways you can contribute to this very much needed cause.

Rare Disease Day 2018 Virtual Race!

Akiya Browning
MEBO Community Outreach Director
Our new MEBO Community Outreach Director, Akiya Browning, who is organizing Team MEBO Research to participate in the Rare Disease Day 2018 Virtual Race! How cool is that? Here's a quote from Akiya as she would like invite you to join her,

There are many initiatives taking place around the globe this month to raise awareness for Rare Diseases, including the Rare Disease Day 2018 Virtual Race! Anyone can participate in this Virtual 5k, 10k, or Half Marathon, and sign-ups are open right now! Join team MEBO Research from the sign-up page to raise funds for TMAU and other rare diseases!

Tell your story for Rare Disease Day 2018!

Click on Icon to tell your story!
Every year, sufferers from our community volunteer to tell their story of what it is like to live with an uncontrollable odor condition. Raising Awareness is a MUST for our community. Otherwise, society at large simply things that the odor is the result of poor grooming. This ignorance tends to enrage those who do not understand that a sufferers goes to great lengths to try to not offend, and thus, they end up behaving like bullies towards sufferers. By telling your story in your own language, you can raise awareness to educate the public. You can write your story, post your photos, or do a video!


Browse through the '7 WAYS TO PARTICIPATE IN RARE DISEASE DAY 2018' page to get ideas of what fits best for you to join in!

These activities can be done anywhere in the world in any language. Just take a look at the Rare Disease Day Events Worldwide! So far, there are 193 events in 63 countries scheduled. So please, get involved by joining Akiya in supporting her new directorship position in MEBO and/or by posting your event!

Check out MEBO's involvement in Rare Disease Day throughout the years (scroll down to see all posts and click on "Older Posts" at the bottom of the page).


María de la Torre
Founder and Executive Director

A Public Charity
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

get New Posts by EMAIL : Enter your email address :

A EURORDIS and NORD Member Organization


Post a Comment