Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Tuesday, October 1, 2013

TMAU webinar in Spanish hosted by RareConnect

6th Webinar on TMAU in Spanish

hosted by RareConnect


Our international TMAU community is profoundly grateful to RareConnect for all the support they have provided for our Raising Awareness Campaign, as well as in our search for a TMAU testing lab so that testing would be more accessible around the world, to have adequate treatment accessible, and to discover a cure.

In only one year, since September 2012, RareConnect has sponsored five (5) webinars (a series of online conferences) in English of professional experts in TMAU, a rare disease. RareConnect has included the trimetilaminuria community, in their website, in which 300 members have registered and more than 60 members from Spanish speaking countries. For this reason, RareConnect has offered to conduct the following webinar in Spanish.



6th Webinar on TMAU in Spanish


Date: October 24, 2013

at 17:00 (5:00pm) local time in Barcelona

*If you don't live in Spain and need to know the time of the webinar in your country, see here: http://www.timeanddate.com/worldclock/converter.html


Program:
- Introduction to the webinar: the TMAU community in RareConnect
- Maria de la Torre - MEBO Research activities
- Dra. Mercedes Serrano - inborn TMAU, Guia Metabólica, information about the TMAU test
- Open discussion, Question & Answer session

The webinar will be recorded and published in Youtube for those who missed it and want to see it again.

Instructions to join the webinar:

1. To enter the webinar meeting room, click here.
2. Register as Guest (invited) with your name [or username]. No password is necessary.
3. Connect your headphones

For more information, you may contact marta.campabadal@eurordis.org

By the RareConnect team, published on September 26, 2013
Original post in Spanish
Translation by Maria de la Torre



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)



Una Asociación de EURORDIS y NORD 

0 comments:

Post a Comment