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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

Friday, February 8, 2013

Ticket Sale for The Boy Who Smells Like Fish


RAISING AWARENESS WITH RENOWNED ACTORS!
To purchase tickets, click here

SEE TRAILER



Cast: Douglas Smith (from HBO Series, Big Love), Zoë Kravitz (Lenny Kravitz's daughter), Ariadna Gil (from Pan's Layrinth), Carrie-Anne Moss (from the Matrix), and many more. See Cast Full Credits.

Tickets go on sale today for the film, The Boy Who Smells Like Fish, premiering at the Olympia Theatre at the Gusman Center for the Performing Arts, Miami, Florida, on Saturday, March 2nd at 6:15pm. This film portrays the life of a sufferer who manifests symptoms from birth, and how it affects his life. Let's show our support and gratitude to the producers at Rhombus Media (Academy Award winner for the Red Violin - see trailer), and the Director and Screenwriter of this film, Analeine Cal y Mayor for telling our story.


The Boy Who Smells Like Fish
Current Ratings (10 votes - 5 stars)
after premiered in Toronto, Canada
www.tribute.ca/reviews


Please spread the word and share information about this film in all the forums, blogs, and websites. One of the most effective tools for raising awareness of medical conditions is actors telling the story. Let each one of us be a part of the raising awareness campaign by sharing this with at least one person, if not more!

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.


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A EURORDIS and NORD Member Organization

2 comments:

Anonymous said...

We should reach out to Lenny Kravitz and Carrie Ann Moss to see if they would make a contribution to Trinzyme.

Feb 8, 2013, 3:06:00 PM
Anonymous said...

http://www.youtube.com/watch?v=6GR1mtGR_Ls trailer !

Feb 8, 2013, 8:37:00 PM
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