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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

Monday, March 28, 2011

Raising Awareness Campaign in UK General Medical Council and others, Part 2

PLEASE HELP!

SUFFERERS FROM ALL COUNTRIES
ARE INVITED TO PARTICIPATE IN SOLIDARITY
AS AN INTERNATIONAL COMMUNITY.

If anyone has not participated yet simply because you may not know what to write, where to begin your story, or because your story is simply too painful to put into words, I invite you to copy and paste the 3 paragraphs below, and email them to the links below. We already have a good Testimonials sent to these entities, and it is better that you send this information below than nothing at all. DON’T FORGET TO SIGN IT with your own name or a pseudonym (Please make it sound like a real name).

If it helps you feel more supported by identifying yourself (first name with the initial of your last name) as being part of an international movement, you can use the MEBO Research signature. It is OK to either do so, or to just sign it individually. Copy and paste it as you like.



RE: To Raise Awareness in the Medical Community of life-devastating body odour medical conditions; to pursue funds for research

To whom it may concern:

Would you please assist us in raising awareness in the medical community, so that when a physician sees a patient presenting with a body odour, he or she would have heard of Trimethylaminuria and be aware of systemic body odour conditions, and would know which tests to prescribe, and which experts to consult with for additional information?

Would you please assist us by referring us to individuals, private organizations, or government entities that we could turn to for research funding into Trimethylaminuria and any other body odour conditions?

Your kind assistance in this matter would be greatly appreciated.

Respectfully yours,

(Your name or pseudonym: a First Name and Initial of Last Name)
MEBO Research Group
www.meboresearch.org
0800 0588015UK
(786)228-6880USA


LINKS TO WHERE YOU CAN EMAIL THIS MESSAGE:

Linda.Willmott@headoffice.mrc.ac.uk

education@gmc-uk.org
publications@gmc-uk.org
gmc@gmc-uk.org
gmctoday@gmc-uk.org

bma-library@bma.org.uk

education-courses@rcplondon.ac.uk

thismorning@itv.com



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A EURORDIS and NORD Member Organization 

1 comments:

Anonymous said...

Post this on rare connect to get more people's attention.

Nov 8, 2016, 8:12:00 AM
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