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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

Popular Posts (last 30 days)

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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, December 3, 2014

'Rare Disease-Detection, Treatment, Care and Research'

Click & scroll down
‘Expert Opinion on Orphan Drugs:
Rare Disease-Detection,
Treatment, Care and Research’

As a EURORDIS Member, the MEBO community can access a special edition of the journal 'Expert Opinion on Orphan Drugs: Rare Disease-Detection, Treatment, Care and Research' for free until 26 December. As the EURORDIS Junior Communications Manager, tells MEBO in an email,

Please use the following link to access the journal online:

This themed issue has been organised in partnership with us, EURORDIS, and NORD. The purpose of this themed issue is to improve the scientific community’s understanding of the important issues surrounding rare diseases and the impact they have on the lives of patients. Our CEO, Yann Le Cam has contributed an article entitled ‘A hidden priority: the paradox of rarity (EURORDIS perspective)’ to the edition, available at the above link.

The issue includes pieces covering the importance of raising awareness and sharing family experiences on coping and caring for a child affected by a complex rare disease; creating patient communities; promoting policies and support in favour of research on rare and genetic diseases; promoting better standards of diagnosis and care; and easier access to cross-border care for patients affected by rare diseases.

For a limited time, you can access content from this themed issue for Free below


Read More:

We appreciate the invaluable work EURORDIS and NORD have done for all rare disease patients and organizations throughout the year. We are proud to be members of these organizations.


María de la Torre
Founder and Executive Director

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

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Use your credit card to make your donation to MEBO.

A EURORDIS and NORD Member Organization 


Anonymous said...

At my new job. People saying it smells like egg here and ino they talking about me :'(

Dec 12, 2014, 6:04:00 AM
Anonymous said...

Dec 22, 2014, 7:15:00 AM
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