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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

Tuesday, September 10, 2013

Volunteers needed for interview with Rare Genomics Institute

This is a a comment made by a team member of Rare Genomics Institute, Divya, on a thread in RareConnect on August 12th, but I was not able to reply until now. To find the original comment, you first need to go to the Trimethylaminuria (TMAU) Community site, and then go to the post "Just A Guy who suffers from TMAU." My reply to Divya’s original post follows her comment below.



My name is Divya, and I am part of a team currently participating in an internship with the Rare Genomics Institute. The Rare Genomics Institute is a not-for-profit organization that supports families who are affected by rare diseases. As the majority of rare diseases are genetic in nature, the Rare Genomics Institute uses donations and grants to give patients access to cutting-edge technologies and leading medical experts by funding full genome sequencing for patients. By analyzing the results, experts hope to find the cause of the disorder. From there, treatments and therapies are developed in an attempt to cure the disease.

To learn more about the Rare Genomics Institute and read some of their patients’ stories, please visit:
As a part of our internship, we would like to interview individuals affected by a rare disease (patients, family members, etc.). The purpose of the interview will be to discuss the impact of rare diseases and the difficulties of coping with them. This will help the Rare Genomics Institute better understand patients’ struggles and allow them to determine how best to care for their patients.

If you, or any other individual diagnosed with this disease would like to share your story with us in an interview- please do not hesitate to contact us at

Divya (anon049eb387)


Hello Divya (anon049eb387),

Thank you for writing about Rare Genomics Institute and inviting us to tell our story. I would love to do all possible to assist your internship program to interview individuals affected by a rare disease. I wonder whether you mean that you are looking for someone already diagnosed with the genetic type of TMAU or someone with life-disruptive odor symptoms for whom no test has yet identified the cause and no diagnosis has been given.

Some of the MEBO Directors and I have had the privilege of meeting Dr. Jimmy Lin, MD, Founder of Rare Genomics Institute, on a conference call. Dr. Lin is also a member of the MEBO Institutional Review Board (IRB). He is indeed inspirational, and MEBO would do all possible to assist Rare Genomics in whichever way we can. Please don't hesitate to contact me at


María de la Torre
Founder and Executive Director

A Public Charity (em português)
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A EURORDIS and NORD Member Organization 


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