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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, August 5, 2011

Meeting with the United States House of Representatives

When Glenna Gonzalez, Public Relations Director of MEBO Research, met with Congressmen of the U.S. House of Representatives, she followed the guidelines set by the Genetic Alliance for making an impact on policy issues. Within the House of Representatives, she made sure that MEBO’s voice was heard regarding the issues concerning the sufferers it advocates for. With each Congressman, she shared collective stories concerning the plight of those suffering from metabolic body odor. She emphasized the need for testing and the need for research and funds. The visit was an attempt to build a relationship with the Congressmen and their congressional staff. The visits were very successful. Thus, the groundwork has been laid so that MEBO now has the opportunity to have meaningful interactions with these offices in its efforts to advocate for body odor disorders.

While each U.S. Representative took a particular stance on Health Care issues, MEBO addressed the issues of those affected and conveyed its reasons for wanting to make an impact on policy-making, as it relates to Health Care issues.

As discussed in our previous post, On Capitol Hill for MEBO Research, Glenna represented MEBO when she met with Congressional Staffers, including two U.S. Senators from Virginia, Jim Webb - (D) and Mark R. Warner - (D). She also met with following Congressional Staffers,
  1. U.S. Representative Gerald E. Connolly of VA - (D) is a strong supporter of Health Care and supported The Affordable Care Act that extends access to affordable health insurance to 30 million Americans.
  2. Republican Majority Leader Eric Cantor of VA supports a bill that bars discrimination due to pre-existing conditions and offers affordable healthcare options to young people.
  3. Representative James Moran - (D) is co-chair of the Congressional Prevention Caucus.
This group educates the public and Congress on disease prevention and health promotion.

Meeting with the U.S. Representatives on Genetics Day On The Hill gave MEBO the chance to get involved and make its voice as an international organization who propels the research of body odor disorders heard. MEBO stated what issues were important to it and what it hopes to accomplish via its advocacy efforts.

Thank you Glenna and all the signatories for your participation in finding a solution,

María

María de la Torre
Founder and Executive Director

A Public Charity

www.meboresearch.org

maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)


PLEASE SIGN THE PETITION TO,


  • raise awareness of systemic body odor conditions in the medical community
  • governments to increase direct federal funding
  • make scientific research of various types of body odor diseases a high-priority; including but not limited to, Trimethylamimuria (TMAU)
  • efforts so that effective treatments and cures can be found.

PLEASE ASK YOUR FAMILY, FRIENDS, AND SUPPORTERS TO SIGN.
Anyone can select to either display or not display
his or her signature publicly on the petition.
PLEASE INDICATE YOUR COUNTRY OF RESIDENCE TO REPRESENT
A UNITED INTERNATIONAL COMMUNITY.

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