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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
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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 :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Saturday, March 1, 2014

US Senate Passes bipartisan Resolution for Rare Disease Day

On February 28, 2014 in U.S. Senator Brown's (D-OH) newsroom press release website, it is announced that a bipartisan resolution led by Senator Sherrod Brown and John Barrasso (R-WY) was passed in Washington, D.C., that would recognize the last day of February as "National Rare Disease Day," "to raise awareness of, and provide support for, the 30 million Americans living with a rare and potentially life-threatening disease or disorder.


Every day 30 million Americans, including too many children, have to live with life-limiting and sometimes life-threatening rare diseases," Brown said. "National Rare Disease Day is an opportunity for Congress to bring attention to these brave Americans, increase awareness about rare diseases, and help us understand the need for advances that can lead to prevention, effective treatments, and cures."

We are most grateful to Senators Brown and Barrasso for showcasing our cause.

We are also most grateful for the fine work done by the National Organization for Rare Disorders (NORD) and EURORDIS, The Voice of Rare Disease Patients in Europe, for representing all its rare disease member organization, including MEBO, and for spearheading the annual Rare Disease Day events around the world. We are very excited and proud to be a part of this movement.

Everyone is encouraged to register in the RareConnect website, Trimethylaminuria (TMAU) Community. Of particular interest is their wealth of information found in their "Learn" section's Documents and Articles (see tabs). RareConnect is a partnership of EURORDIS and NORD in which many sufferers have found it beneficial to participate in. RareConnect has also sponsored the many webinars that our experts have volunteered to do for us, such as,
These webinars are filled with very valuable information for our community, to which we owe kuddos to RareConnect for making it available to us. Please support this movement by registering with RareConnect today.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)



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A EURORDIS and NORD Member Organization 

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