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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

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

Sunday, April 22, 2018

Personal GenoME Project UK accepts MEBO Research

After being accepted in the Genomics England Program, MEBO was invited to attend the Personal Genome Project UK GenoME Event on April 12, 2018, which was held at the University College London. It was a wonderful event, and our very own Public Relations Director, Karen James, attended representing MEBO. It was a perfect networking opportunity for MEBO to be able to,

  • Learn about the Personal Genome Project UK
  • Celebrate the launch of GenoME - a free educational app to explore personal genomes
  • Hear their Ambassadors reveal their genomes and discuss Citizen Science
  • A chance to get genome sequenced.

Below is a synopsis from Karen regarding her experience in this event:


On Thursday 12th April, 2018, I attended the launch event at UCL for the Personal Genome Project. The project aims to encourage the sharing of genetic data publicly and, ultimately, to develop pioneering research techniques. PGP UK is open to everyone over 21. Its objective is to make a person's data readily accessible through their genome app, GenoME.

The launch explained how the app works by using 4 volunteers to share and discuss their own data. The data collated from individuals can be compared and conclusions drawn up about health tendencies. The app reveals the total number of single nucleotide variants in the population, the number of variants the individual shares with others, and the number of private variants which are unique to that particular individual or family group. Each individual's variant type can reveal a predisposition towards a particular disease, so freely sharing such data internationally can potentially flag up specific diseases.

The global Personal Genome Project network currently includes: London, Vienna, Shanghai, Boston and Toronto. If you would like to register interest in participating in the project and/or find out more, visit:




Karen James
Public Relations Director
Raising Awareness Activist


A Public Charity
karen.james@meboresearch.org
www.meboresearch.org
MEBO's Blog (English)

Thank you very much, Karen, for networking for MEBO. Your invaluable ongoing work for our community is truly appreciated!


María

María de la Torre
Founder and Executive Director
A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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