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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

Wednesday, November 14, 2012

MEBO Research, registered Patient Organization in ORPHANET


MEBO RESEARCH IS PROUD TO BE
A REGISTERED PATIENT ORGANIZATION OF

ORPHANET

There is no disease so rare
that it does not deserve attention

Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.



Orphanet services:

Orphanet offers a range of freely accessible services:
  1. An inventory of rare diseases and classification of diseases
  2. An encyclopaedia of rare diseases
  3. An inventory of orphan drugs at all stages of development, from EMA (European Medicines Agency) orphan designation to European market authorisation.
  4. A directory of specialised services, providing information on specialised clinics, medical laboratories, ongoing research projects, clinical trials, registries, networks, technological platforms and patient organisations, in the field of rare diseases, in each of the countries in Orphanet’s network.
  5. An assistance-to-diagnosis tool
  6. and many more

Orphanet offers a listing of Support Groups by Country, and a page listing all the labs in Europe that test for TMAU, and other websites.

MEBO Research is listed under the Disease group of Trimethylaminuria,

Orpha numberORPHA35056
Synonym(s)Fish-odor syndrome
PrevalenceUnknown
Inheritance
  • Autosomal recessive
  •  
  • Sporadic
Age of onsetVariable
ICD-10
  • E88.8
OMIM
UMLS
  • C0342739
MeSH
  • C536561
MedDRA
  • 10068233
SNOMED CT
  • 237959005

Another site in which information can be found on Trimethylaminuria is the Metabolic and Genetic Information Center,
This page references an article, The Clinical utility gene card for: Trimethylaminuria, written in the European Journal of Human Genetics (2012) 20, doi:10.1038/ejhg.2011.214; published online 30 November 2011, by MEBO's Scientific Advisor, Drs. Elizabeth Shephard, and colleagues, Drs. Ian R. Phillips and Eileen P Treacy. We thank Drs. Shephard, Phillips, and Treacy for their unending support and guidance to MEBO Research through the years.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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A EURORDIS and NORD Member Organization

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