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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

Tuesday, September 18, 2012

Join NORD and MEBO Research in Opposing Budget Cuts


Under the Budget Control Act of 2011, there is a possibility of an across-the-board funding cuts of approximately 8 percent that could be imposed upon NIH, FDA, and other federal agencies in January 2013. CONGRESS HAS NOT YET REACHED AN AGREEMENT ON A BUDGET DEFICIT REDUCTION PLAN, AND YOU CAN MAKE A DIFFERENCE! It is up to us to let them know that we oppose any budget cuts resulting in the loss of ability to fund new research grants or reduce commitment to existing grants.

The cuts would slice $2.5 billion from a $30 billion budget, resulting in the loss of the ability to fund about 2,300 new grants or reduced commitment to existing grants.
Last week, the White House Office of Budget and Management (OMB) released a report on the possible effects of these funding cuts, known as "sequestration", on federal agencies. The cuts could result in the loss of 1,200 FTEs at FDA alone. They could negate much of the anticipated benefit from this summer's FDA Safety and Innovation Act.

At NIH, the result would be equally devastating. The cuts would slice $2.5 billion from a $30 billion budget, resulting in the loss of the ability to fund about 2,300 new grants or reduced commitment to existing grants.


Support a Balanced Approach to Deficit Reduction

As part of the Budget Control Act of 2011, a budget cut of between 8.5% and 10% of all Federal programs is to take effect at the end of this year. This includes all research funding at NIH, and all regulatory science activities at the FDA, including those made possible by user fees.
Take action now to support a balanced approach to deficit reduction and let your elected officials know that Federal support for rare diseases is important to you.

See NORD'S Alert for additional information

In recent weeks, NORD has been meeting with other organizations concerned about these potential cuts, including the Coalition for Health Funding ( It is our fervent hope that Congress and the President will reach agreement on a deficit reduction plan before January so that the cuts won't be implemented.

But in the meantime, we encourage you to submit a letter to your elected officials through NORD's Legislative Action Center to let your elected officials know that Non-Defense Discretionary (NDD) programs, including medical and scientific research, education, public health and more, have already borne more than their fair share of responsibility for deficit reduction.

We encourage you to personalize your letter by including information about how a rare disease has affected you or your family.


María de la Torre
Founder and Executive Director

A Public Charity
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