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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

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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

Thursday, October 29, 2015

UK : list of metabolic health professionals who see TMAU patients

Someone kindly sent details of some Health Professionals in the UK who see TMAU patients for our MEBO Malodor Map

List

Dr Robin Lachmann
Charles Dent Metabolic Unit
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG
Tel. 020 3448 4778 Fax. 020 7209 2146


Dr Chris Hendriksz
Adult Inherited Metabolic Disorders Clinic
Salford Royal NHS Foundation Trust
Stott Lane
Salford M6 8HD
Tel. 0161 206 4365

Dr Tarekegn Hiwot
Consultant in Inherited Metabolic Disorders
Dept. of Endocrine and Diabetes
Birmingham University Hospital
Selly Oak
Birmingham B29 6JD
Tel 0121 627 1627

Dr Helena Kemp
Dept. of Clinical Biochemistry
Southmead Hospital
North Bristol NHS Trust
Westbury on Trym
Bristol BS10 5NB
Tel. 0117 323 5509


We have read that there are other Health Professionals in the UK who see TMAU patients, usually in a setting such as an Adult Metabolic Unit in a regional hospital. For instance in Cardiff, Glasgow.

TMAU Health Professionals
If you know any health professional who treat TMAU we can add them to our MEBO Malodor Map
Send details to map@meboresearch.org

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