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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)

Upcoming get-togethers

Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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)

Tuesday, February 23, 2016

World Rare Disease Day: Feb 29, 2016

be a part of the experience

All are welcomed to get involved in this year's World Rare Disease Day on Monday, February 29, 2016! Join the movement! Advocate for the over 350 million with a RARE disease today! Click here to see how to get involved.

World Rare Disease Day is an annual observance to raise awareness for rare disease and improve access to treatments and medical representation for individuals with rare disease and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 9th annual World Rare Disease Day will be held on Monday, February 29, 2016. On this day, various activities take place globally.

Last year, volunteers from our community participated in this annual event by telling their story in the 'Share Your Story Through Social Media' part of this event.

There are millions of technology users who access social media everyday, this makes social media one of the best avenues to share your story and spread awareness. The new RAREToolkit: How to Promote Your Rare Disease Story Through Social Media will provide hands on tips and how-to's, from how to use some of the most popular platforms available to, how to effectively share your story through them. Check it out here.

Social Media Awareness - Patients, advocates, and industry alike can grow social awareness by sharing photos, information and events with Global Genes' FacebookTwitter, and Instagram. Supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2016, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit and upload their photo into photo frames to use as social media profile images to further help spread awareness.



María de la Torre
Founder and Executive Director

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

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A EURORDIS and NORD Member Organization


Anonymous said...

If rare disease day raises money then have they or will they give some grants to tmau research?

Feb 24, 2016, 4:42:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

By offering rare disease communities to raising awareness, this event assists the Trimethylaminuria community in getting publicity in hopes that we can raise our own funding for research.

The money that is raised by them is used for lobbying efforts to have laws passed to help Rare Disease patients and their communities achieve their goals. For example of some of these efforts, please click on the following link and scroll down to read all posts.

Feb 29, 2016, 3:01:00 PM
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