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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

Sunday, September 6, 2009

splashnews.com journalist looking for female TMAU sufferers story

The tmau.org.uk website has only been around a few months but already is having a big impact. The forum already has 30 members, and they already have an interview scheduled with Dr Robin Lachmann, who is the professional TMAU contact for sufferers at the London Adult Metabolism unit (ask Dr Lachmann a question). Now a journalist (Laura Hinton) with splashnews.com has contacted them to find a female TMAU sufferer to tell their story for possible magazine or newspaper article material. This is a copy of the announcment from the tmau.org.uk front page. we hope they don't mind us posting it here.

News agency - seeks tmau sufferers for story

Laura hinton from splashnews.com is looking to write a feature on TMAU, this could be a great opportunity to get our story out there.

The agency syndicates to all of the major national newspapers and magazines.

We need YOU to volunteer !

Here's the email that Laura sent to me explaining what she is looking for.

"I'm emailing from Splash News Agency in London. We write real-life and human interest features for the national newspapers and the women's magazines. I know it's a long shot but I wondered if any females who suffer from trimethylaminuria would be happy to speak to me about their experiences in order to raise awareness of the condition? They would have to be photographed but can have a fake identity and I can request your website details are included in the copy. I look forward to hearing from you....if people want to get in touch..they could just let me know a little about themselves like their age, where they're from and how the condition affects their life etc that would be really helpful. I can then let them know whether I think I can get their story placed. "

Laura provided a long list of national news papers and magazines that could potentially run the feature.

I know it is a big decision for anyone to make, but I would urge you to take courage from the fact that this could really advance our cause and help a lot of people in the process.

If you think you can help please contact Laura:

lhinton@splashnews.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it

If you prefer you can use the 'Contact us' form on the tmau.org.uk website and we will forward your emails to Laura

Many Thanks...

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