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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)

TMAU Movie


THE BOY WHO
SMELLS LIKE FISH

Movie also called,
TREADING WATER
See trailer'
Winner of Golden Trailer Award 2013

Upcoming get-togethers


Let us know if you want a meetup listed

Employment Ideas


Please click to fill out questionnaire
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

Monday, September 9, 2013

WEGO Health, Empowering Health Activists

One of the MEBO Directors received the following invitation from SusanM of the WEGO Health Team, and anyone and everyone in our community who would like to be a part of our MEBO Raising Awareness Campaign is welcome to join and participate. If you would like to represent our cause united with other sufferers of our international community, please let me know at maria.delatorre@meboresearch.org, and I'll put you in touch with each other.

The following is a copy of the email received:



From: Susan Mees
Date: September 9, 2013, 2:00:04 PM CDT
Subject: Speaking Opportunities on Health Issues
Reply-To: susanm@wegohealthmail.com



Greetings from WEGO Health!

As part of our ongoing mission to empower Health Activists, patients, and caregivers, WEGO Health will be holding regular, paid focus groups centered around various health topics and the online community.

These discussions will bring together bloggers, tweeters, and active community members to discuss their health condition, their favorite resources, and ways to help raise awareness and share information. These discussions will last one hour and will give you the opportunity to connect with others like you who are interested in health, social media, and living well with illness. Each panelist will be featured on the WEGO Health blog and social platforms and will receive compensation for their time.

To be included in our panels, just tell us a little bit about yourself (and the conditions that matter most to you):
http://info.wegohealth.com/hart-short-2


If you have any questions, please email us directly at community@wegohealth.com.

We look forward to speaking with you soon!

Cheers,

The WEGO Health Team

WEGO Health | 180 Lincoln St, Fifth Floor | Boston, MA 02111

For more information, visit the WEGO Health website, ABOUT WEGO HEALTH

María


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 

posted by Maria de la Torre on 9/09/2013
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