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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

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

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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

Wednesday, April 22, 2020

EURORDIS initiative Survey COVID19 and Rare Diseases

where do we stand now in this pandemic as the unemployment rate has spiked?
The US National Organization Of Rare Diseases (NORD) has sent MEBO an invitation to "Make your voice heard!", a EURORDIS initiative. MEBO is an Organization Member of both these entities.

They invite us all from around the world (IN 23 LANGUAGES) to take a survey for a study which is looking at how we are affected by the COVID19 Pandemic. Their goal is to voice the specific needs of rare disease patients during this medical and economic crisis.

Please let us tell the world about the challenges we face due to this condition.

Even though sufferers have customarily had the tendency to live in relative reclusion and social distancing due to odor symptoms of TMAU, and our condition has made employment prospects challenging, where do we stand now in this pandemic as the unemployment rate has spiked?

What other impact has this had on people with uncontrollable odor conditions?

EURORDIS tells us:

Are you affected by a rare disease or a caring for someone affected by a rare disease? Share your experience and tell us how of the COVID-19 pandemic is affecting you by completing this survey.
The survey will only take around 15 minutes to answer.
This survey will help EURORDIS-Rare Diseases Europe, a non-profit and non-governmental alliance of 900+ patient organisations to understand your experience of the COVID-19 pandemic.
We will share the overall results of the survey with you and communicate them (without communicating your individual responses) to decision-makers. The goal is to voice the specific needs of rare disease patients’ in relation to the COVID-19 pandemic and to propose practical solutions to ensure rare diseases patients are take into account when handling the pandemic.
Your contact details and any written records of your responses during the study will be kept in secure storage which only the research team can access.

If you have any questions while taking part in this survey, you can contact, or call our office on +33 1 56 53 52 63.

MEBO Research has been a Member Organization for years of both, NORD and EURORDIS.


María de la Torre
Founder and Executive Director

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

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A EURORDIS and NORD Member Organization


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