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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)

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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

Tuesday, January 15, 2013

What is RareConnect.org?

RareConnect.org is a partnership of EURORDIS and NORD that aims to connect rare disease patients globally. There are three Partners and Patient Groups in the Trimethylaminuria Community:

EURORDIS is the European Organisation for Rare Diseases, “the voice of 30 million people affected by rare diseases throughout Europe…is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.”

NORD is the National Organization for Rare Disorders, “a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.”

WEBINARS sponsored by RareConnect: Thanks to Rob Pleticha’s, Eurordis Online Community Manager, dedicated hard work, RareConnect provides the Webinars Series for our community. RareConnect will be hosting the next webinar on February 1st. For additional information on this presentation and how to attend, please see the post in this blog.

FIRST WEBINAR OF 2013
February 1, 2013, United States : at 5pm GMT/noon EST: Drs. George Preti, Paul Fennessey, and Danielle Reed on TMAU webinar with George Preti, Paul Fennessey, and Danielle Reed,
  1. Updates on genetics of TMAU (Dr. Reed), and
  2. TMAU : evaluation of individuals with malodor problems (Preti, Fennessey, Reed).

WEBINARS OF 2012
December 2, 2012, New Zealand : Dr. Richard Mackay on Laboratory testing for trimethylamine excretion

October 28, 2012, London : Dr. Robin Lachmann & dieticians, Heidi Chan and Charlotte Ellerton on Diagnosis and Treatment of TMAU – The London Experience

September 23, 2012 London : Drs. Elizabeth Shephard and Ian Phillips on FMO3: bugs, genes and drugs.


María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

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