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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

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MEBO survey for Dr Hazen click here
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Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

MEBO Research Clinical Trials

Tuesday, November 13, 2012

Help NORD Protect Federal Support for Rare Disease Programs

»» ADVOCACY ALERT ««


November 13, 2012



Dear NORD Members and Friends:

You have an opportunity today to do something incredibly important to promote the development of life-saving therapies for people with rare diseases.

Congress has just returned from its post-election recess. Now our nation is in a countdown to devastating budget cuts that will go into effect for NIH, FDA and other government agencies on January 1 if Congress doesn't take action to resolve the budget impasse.

These across-the-board budget cuts of 8.2% would have a major impact on rare disease research funded by NIH and the review of potential new therapies at FDA. They would mean the loss of $2.5 billion from NIH's $30 billion medical research budget. And they could significantly reduce NIH's ability to promote innovation in areas such as translational research to bridge the gap between basic research and treatments for patients.

The cuts would also slice $319 million from FDA's budget and force the agency to undergo major staff reductions, leading to much slower drug reviews and approvals. They would stall implementation of many of the important rare disease provisions in the FDA Safety and Innovation Act that we all worked so hard to get enacted earlier this year.

You can do something to help keep this from happening: In the Legislative Action Center on NORD's website, you'll find a basic letter NORD has prepared that you can personalize with your own information and submit to your members of Congress and the White House.

This letter recognizes that our nation is in a fiscal crisis but presents the case for a balanced approach to deficit reduction that does not include further cuts to "Non-Defense Discretionary (NDD) Programs." These are programs representing the core functions that government provides for the benefit of all, including medical and scientific research, education, public health and more.

NORD has joined more than 80 other organizations in the Coalition for Health Funding to present a broad base of support urging Congress and the White House to reach agreement on a deficit reduction plan before January so that the cuts won't be implemented.

Please join us in this important campaign by submitting a letter to your elected officials today urging them not to let "sequestration" (the across-the-board budget cuts) happen. You can personalize your letter by adding information about the way a rare disease has impacted your family.

NORD will keep you informed as this situation unfolds. And we encourage you to share this campaign with your family and friends. Our nation is in a fiscal crisis, but cutting medical research programs that create jobs and stimulate our economy is not the answer.




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)
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