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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

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to join : go to
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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, March 8, 2017

NORD Issues Statement ACA, AHCA, Medicaid

A EURORDIS and NORD Member Organization
It is precisely for the fine work NORD and EURORDIS performs representing its members with our lawmakers that MEBO is proud and grateful to be an Organization Member. With all the upheaval about healthcare in the United States, NORD is in the forefront representing the needs of Rare Disease sufferers.

NORD Issues Statement as House Committees Review the American Health Care Act
, , 

Posted by Jennifer Huron

Washington, D.C., March 8, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in advance of today’s hearings on the American Health Care Act:

Monday evening, House Republicans released their long-awaited Affordable Care Act (ACA) replacement package called the American Health Care Act (AHCA). This bill aims to repeal many ACA provisions through budgetary reconciliation, and replace them with alternative provisions.

On behalf of our over 260 member patient organizations, NORD put forward a set of ‘Principles for Health Coverage Reform‘ to which Congress and the Administration should adhere in order to avoid harming rare disease patients in their repeal and replace efforts.

After comparing the AHCA to our principles, we find that several key patient protections are maintained, but changes to the private insurance market and Medicaid program may jeopardize access to affordable, quality health care for rare disease patients. We look forward to working together with Congress to resolve these potential patient access issues...

While the AHCA adheres to several of our principles, additional changes to Medicaid may jeopardize the health and wellbeing of Medicaid beneficiaries with rare diseases. We are concerned about the effect instituting per capita cap allotments may have on medically necessary care for individuals with rare diseases. Individuals with rare diseases are already facing Medicaid access challenges in many states, and we believe cutting Federal contributions may worsen the situation...

Read about NORD’s ongoing policy work to address the coverage protections of all 30 million rare disease patients. 
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María de la Torre
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