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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

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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

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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Friday, November 22, 2013

TMAU Research Grant posted in RCUK Gateway to Research


The "Therapy for the body and Breath malodour disorder Trimethylaminuria (TMAU)" has been posted by the UK Medical Research Council in the Research Councils Gateway To Research Site. You can also access this award information by going to the RCUK Gateway to Research site, and typing in the award code, MR/K015494/1. Please feel free to read all about it, including the Abstract, Technical Summary, and Planned Impact of this research as registered with the Medical Research Council, UK.

Our scientists do not wish for sufferers to put themselves or their families in a difficult economic situation to donate to this fund.
We have been announcing this grant since December 2012, and have been fundraising to support it with the Trinzyme Project. After discussing our fundraising efforts with our Scientific Advisor and Principal Investigator of this research project, Professor Elizabeth Shephard, I would like to relay what she and another scientist have told me. Our scientists do not wish for sufferers to put themselves or their families in a difficult economic situation to donate to this fund. In regards to this research project, the suffer's needs and well-being come first above all others.

Having said this, it is MEBO's aim to fundraise for large donations, and we hope to launch an aggressive fundraising project in 2014. As we have been saying all along, the more we can delay involving investments from pharmaceuticals, the lower the cost to sufferers this therapeutic will be. If you are interested in being part of this fundraising project, please come with your ideas and volunteer work efforts so that we can organize a strong campaign.

Needless to say, I know our whole international community is elated with excitement over this incredible opportunity to lead normal, healthy lives. It will take a few years for this therapeutic to come to fruition and to become available to sufferers, but it is well without our grasp in the immediate future. Now, all we need to do is to work hard to keep the cost down.

María


MEBO UK PAYPAL FOR TRINZYME
********
MEBO US PAYPAL FOR TRINZYME
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María de la Torre
Founder and Executive Director

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



A EURORDIS and NORD Member Organization 

1 comments:

Maria de la Torre said...

Looking for translators to write this in multiple languages in facebook, the MEBO Spanish and Portuguese Blogs and in RareConnect. Please feel free to translate and post in your respective sites, or to copy and paste into any and all sites. The point is to get this information out to the public. Thanks to everyone for their enthusiasm and support.

Nov 22, 2013, 12:31:00 PM
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