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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)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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, February 20, 2020

tmau : visit NIH for RARE DISEASE DAY 28 Feb

USA NIH Rare Disease Day event
28 Feb 8.30am - 4.30pm
Natcher Conference Center in Building 45 on the NIH main campus in Bethesda, Maryland
Admission FREE
Everyone welcome
Register here : NIH link

Videocast : or you can watch online

MEBO readers are welcome to attend the annual Rare Disease Day at the NIH building.
NIH Director Francis Collins will be there.
Rare Disease Day at NIH will take place on Friday, Feb. 28, 2020, from 8:30 a.m. to 4:30 p.m. in the main auditorium of the Natcher Conference Center in Building 45 on the NIH main campus in Bethesda, Maryland. Registration (link is external) is now open!
This year’s event will feature interactive panel discussions and more:
    Shortening the diagnostic odyssey.
    Individualized therapies and personalized medicine.
    Expanding and improving access to rare diseases knowledge.
    Inspiring stories through TED-style talks.
    NIH Town Hall question-and-answer session.
    NIH clinical trial resources.
    Posters and exhibits (link is external) by rare disease groups and researchers.
    Artwork and tours of the NIH Clinical Center (link is external) and National Library of Medicine (link is external).
Admission is free, and the event is open to the public, including patients, patient advocates, health care providers, researchers, industry representatives and government employees.
Please note that participants may be photographed or filmed as part of the event for use by the NIH and its designees for all purposes of education, instruction or public information including publication or broadcast, print, television, radio, the internet or promotional material. If you do not wish to be photographed, please indicate so on your registration form.   
NIH link
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A EURORDIS and NORD Member Organization

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