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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

Saturday, November 9, 2013

Sign The Petition For Cheryl Fields

Sign The Petition For Cheryl Fields (You do not have to list your name for privacy) 11/6/13 - Trimethylaminuria (TMAU) forums - RareConnect

Rob Pleticha (RareConnect), Karen (MEBO PR Director), and I would like to ask you to please sign Cheryl Field's (MEBO Community Service Director) petition in support of her efforts to raise awareness of the needs of persons with disability in the job application process.  United we can make our rights and needs be known.

It is a human right for us to work if we choose to and to contribute positively to the society of which we are a part. A metabolic disorder should not inhibit our career progressions!!  Karen



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 

2 comments:

Anonymous said...

First of all I would like to thank Maria for all her fantastic efforts with this site.

I am a life-long TMAU sufferer, I first started getting negative comments at the age of 11 years when I started secondary school, I am now in my 50's. I have 2 children and they both have this condition eventhough they have different fathers. I strongly believe that awareness should start in secondary school because this would both inform our future doctors, teachers and politicians, as well as keeping victimised school children from taking their own lives.

I know first hand how this devastating condition can isolate and destroy a life. The whole idea of 'living' a life is; to make friends, get a job and find a life partner but when this condition prevents us from being in someone's 'personal space' for fear of offending, being in that personal space can lead to rejection and humiliation. Not being able to live a life but merely existing is not enough.

Information packs together with a detailed letter should be sent to every head teacher of every secondary school, suggesting that this should be addressed in science classes, the cause of body odour is often attributed to poor hygeine because of bacteria build-up but if children were aware of a medical reason being the cause then sufferers would be able to get a test and the bullies would think twice about how they persecute the afflicted.

Nov 20, 2013, 12:56:00 PM
Anonymous said...

Hi! I'm a bromhidrosis sufferer for almost 10yrs. I'm 23yo now, girl, and working. My life is totally devastated everyday especially at work. People make fun of me, don't go near me and always sniff whenever I'm around. A lot of times I've attempted suicide. I actually wanna die. Everyday I hope to actually be dead. This blog enlightens me up and I'm looking forward to reading and knowing more information on treating bromhidrosis. I'm begging..... I hope you can help us out especially with information. I'm thinking of having surgery but I'm scared it might not work. God bless all the people behind MEBO. YOU ARE ALL AMAZING. I SALUTE YOU.

Mar 29, 2014, 12:29:00 PM
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