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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, May 17, 2013

Survey on Access to Care for Individuals with Genetic Conditions

MEBO Research has received an email from the Program Manager of the National Genetics Education and Consumer Network (NGECN), Genetic Alliance. She is asking for volunteers who have been daignosed with having a genetic condition to fill out a survey by Thursday, June 6, 2013. Below is a copy of the email.


Good afternoon,

We are reaching out to you for your help in disseminating a survey to your members with genetic conditions and their families and anyone else who may be eligible and interested in participating. To be eligible, respondents must have been told by a doctor or other health care provider that they (or their child) have a genetic condition.

Genetic Alliance, in collaboration with the American College of Medical Genetics (ACMG) and the Health Resources Services Administration (HRSA), is conducting this survey to assess how individuals with genetic conditions access health care and support. The data will be very helpful in painting a picture of health care experiences of individuals with genetic conditions and their families, and will provide direction for future programmatic efforts with the goal of improving access and health.

We ask that you share this message and the survey link below and request that individuals complete the survey by Thursday, June 6, 2013.
https://www.surveymonkey.com/s/SurveyAccesstoCare

If you have any questions about the survey or use of the data, please contact Sharon Romelczyk, Program Manager at sromelczyk@geneticalliance.org. This project has been approved by Genetic Alliance’s Institutional Review Board (IRB) to protect all survey respondents and ensure that all responses will be kept confidential.

Thank you,


Sharon

Sharon Romelczyk, MPA
Program Manager
National Genetics Education and Consumer Network (NGECN)
Genetic Alliance

María


María de la Torre
Founder and Executive Director

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A EURORDIS and NORD Member Organization 

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