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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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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, January 27, 2012

Fifth International Rare Disease Day by EURORDIS

A WORD FROM CHERYL FIELDS, MEBO U.S. Community Outreach Director
to our international community

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!

29 FEBRUARY 2012 is International Rare Disease Day.

***During the month of February 2012, this year we will be raising awareness about TMAU for the entire month of February 2012. This is our time to stand, shine, and make positive contributions about our disorder/disease. Please stand by for additional details on how you all can help make it happen.

Cheryl has informed EURORDIS of the following:

We [MEBO Research]are asking for volunteers from all over the world to contact their local media outlets to do a story on MEBO Research and people with TMAU. The goal of the group is to get on CNN international and on the global international television stations.There are TMAU patients all over the world. People with disabilities deserve a fair chance to work, live, and love.

Thank you so very much for your time.

Very Sincerely,

Cheryl Fields, MBA, Ph.D. (ABD)
Community Outreach Director
MEBO Research
(785)-286-7005, Home Office/Voice-Mail

Dr. StillStanding----somehow?

She has also written to various rare genetic diseases groups asking for support and participation on International Rare Disease Day, such as the organizations listed below:
  1. Hong Kong Mucopolysaccharidoses Rare Genetic Diseases Mutual Aid Group
  2. Canadian Organization for Rare Disorders
  3. National Alliance for Rare Diseases Romania

Let's show our support to Cheryl, and if you are planning an awareness-raising event in a country that is not listed here, please contact Cheryl at:, or

Your participation is greatly appreciated.

halitosis research

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