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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


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

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BO Sufferers Podcasts

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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

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Blog Archive

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Saturday, August 2, 2014

The BLACKSWAN Foundation's RE(ACT) Community

Click on icon
MEBO supports The BLACKSWAN Foundation's RE(ACT) TMAU initiative because it provides "four main axis dedicated to research on rare and orphan diseases: Learn, Meet, Share and Support."

The RE(ACT) effort can be supported by affected persons registering as followers in order for in order for the disease to become unlocked, so that sufferers can have the opportunity to give a description of the disease and its symptoms and for it to become "research projects ready for funding." Once unlocked, sufferers will have the possibility to raise awareness by sharing their personal experiences with the disease. These steps lay the groundwork for fundraising.

Not all sufferers are in a position to significantly contribute financially to the substantially large funds needed to carry out research. Nonetheless, funding cannot be understated as essential for research to be carried out, and without research, there will be more of the same with no new treatment options or a cure... Even if unable to contribute financial, each and every sufferer around the world can be proactive in the quest for research by being a part of the MEBO Raising Awareness Campaign. In fact, with a raising awareness initiative, research cannot be organized and carried out.


Without an organized community of patients that would be impacted by the outcome of research, a research project will never be funded.
It has always been MEBO's goal to unite sufferers and researchers because since this condition draws sufferers into a socially reclusive lifestyle, awareness of the condition has been almost nonexistent and experts simply do not have the pool of sufferers to conduct research, much less obtain funding. It is imperative that all sufferers come out of "hiding in shame" and stand as a united international community in order for anyone to take us seriously.

As noted in the UK MRC Gateway to Research The "Patient group MEBO" is registered as the one who will be impacted by the outcome of the research, 'Therapy for the body and breath malodour disorder Trimethylaminuria (TMAU)', which was awarded a research grant of £358,000 GBP (equivalent to 422K/Euros or 552K/USD). Without an organized community of patients that would be impacted by the outcome of research, a research project will never be funded.


our united efforts will show researchers and potential financial supporters that although TMAU and other odor-causing metabolic disorders are considered to be rare diseases, the international MEBO community of sufferers is a cohesive, well organized, inspired and proactive community determined to exhaust all avenues to find an effective treatment and cure.
No matter which research project you wish to financially support, all sufferers around the world are strongly encouraged to participate in the MEBO Raising Awareness Campaign by telling their story at every fundraising opportunity. If for no other reason, our united efforts will show researchers and potential financial supporters that although TMAU and other odor-causing metabolic disorders are considered to be rare diseases, the international MEBO community of sufferers is a cohesive, well organized, inspired and proactive community determined to exhaust all avenues to find an effective treatment and cure. The RE(ACT) project, created by the BLACKSWAN FOUNDATION is one of the avenues at our disposal to put into action our pursuit of research and our raising awareness efforts.


PLEASE BE A PART OF IT!


The BLACKSWAN [Foundation] is based in Switzerland, its principal mission is to provide financial support for research on rare and orphan diseases. Research projects are selected by a Scientific Committee composed by internationally recognised experts. The Foundation is also committed in enhancing the public understanding on rare diseases by promoting information campaigns.

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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