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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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :

current participants : 113 (update 18dec20)

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)
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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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