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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

Friday, March 20, 2015

A message from NORD

Thanks to Tracy stepping up and telling her story for RareDisease Day 2015, Trimethylaminuria was represented in this event. We thank you, Tracy, for your contribution to our cause.

“More than 160 people submitted photos & stories to the Handprints Across America™ gallery. By working with Rare Disease Day founder, EURORDIS, our efforts helped to make this a truly global event with hundreds of patient organizations & thousands of events on every continent. Several new countries, including Bolivia, Estonia and Madagascar, participated in Rare Disease Day for the first time.”


Rare Disease Day 2015 Highlight Video
Rare Disease Day 2015 Highlight Video
Rare Disease Day 2015 was our biggest and most impactful yet!
The final 2015 State House Event took place yesterday.  Now that all of the numbers are in, take a look at (and share!) this year's highlight reel & recap:
  • ​Together, we planned and hosted 32 State House Events in capitol buildings across the U.S., up from last year's 12 State House Events
  • Governors in 36 states issued proclamations for "Rare Disease Day"
  • The Senate passed a resolution declaring Feb. 28, 2015 "Rare Disease Day"
  • Nearly 1,500 people and 189 state legislators & staff attended the State House Events, which featured participation from 83 organizations85 patient & caregiver speakers35 state legislative speakers, and 39 medical professional & industry speakers
  • More than 800 partners joined the movement by signing on to the U.S. Rare Disease Day website & combined forces with advocates in 80+ countriesaround the world
  • Rare Disease Day trended on Facebook for the first time
  • More than 160 people submitted photos & stories to the Handprints Across America gallery
  • Millions of people around the world watched this year's video
  • By working with Rare Disease Day founder, EURORDIS, our efforts helped to make this a truly global event with hundreds of patient organizations &thousands of events on every continent. Several new countries, including Bolivia, Estonia and Madagascar, participated in Rare Disease Day for the first time
With all of our efforts, Rare Disease Day continues to grow! Thank you to everyone who planned and attended events, joined the social media campaign, changed their profile photos, shared infographics, and got involved.
As the official U.S. sponsor of Rare Disease Day, NORD thanks everyone who came together to support this truly community and group effort.  Together, we are strong!
Keep the Momentum Going
You can help keep the positive Rare Disease Day momentum going by urging your representatives to support the Ensuring Access to Clinical Trials Act.  This bipartisan legislation would help more people with rare diseases participate in clinical trials without fear of losing important benefits or health coverage. Learn more & take action as easily as entering your zip code.
Looking Ahead: Rare Disease Day 2016
Planning is already underway!  So far, 27 states have committed to hosting State House Events.  Join us and get involved - send us an email and visit thewebsite in the coming months. 
Rare Disease Day 2016 will take place on Feb. 29, 2016, the rarest of all calendar days.

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