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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

Tuesday, October 1, 2013

Stand With NORD Against Government Shutdown



Stand With NORD Against Government Shutdown


The NORD President and CEO asks all NORD member organizations to stand with NORD Against Government Shutdown. he tells us,


[the government shutdown is ] ...having significant, harmful effects on all of us in the rare disease community. Essential services that patients rely on are being threatened. Their decision earlier this year to sequester funding for essential agencies like the NIH and FDA is causing delays in the research, development and review of new therapies. This is especially troublesome because there is strong momentum favoring investment in rare diseases and orphan products. Now, with the Federal shutdown, these agencies cannot even function!

Peter asks us to contact our Congress persons and make them listen. He gives us a link of where we need to express our concerns. Please CLICK HERE to read his full message.

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 

2 comments:

Maria de la Torre, Founder and Executive Director, MEBO Research said...

This is the reply I received from my US Senator, Marco Rubio!

Thank you for taking the time to contact me, please be advised due to the government shutdown, my office is currently closed. My office will respond to your concerns or resume work on your case as soon as the office reopens. In the interim, if you would like to leave a comment for me, you may still do so at 1-866-630-7106 (within Florida) or 202-224-3041.

Sincerely,
U.S. Senator Marco Rubio

Oct 1, 2013, 7:21:00 PM
Anonymous said...

Pls help me and my son.
We Invisible Disorder with and odor.
Depressed all the time

Oct 2, 2013, 5:37:00 AM
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