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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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BO Sufferers Podcasts

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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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London TMAU meeting with Prof Liz Shephard
19th Oct 11am - 1pm
St Mary's Hospital
Praed St, Paddington
London W2 1NY
click to read more
more details : karen.james@meboresearch.org

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Thursday, October 29, 2015

EURORDIS invitation to create young people network

A EURORDIS and NORD Member Organization 


As a EURORDIS organization member, MEBO has received the message below from EURORDIS - Rare Diseases Europe, an invitation to create a network of young people living with a rare disease, to participate in EURORDIS or European Medicines Agency activities. If anyone wishes to volunteer to represent MEBO and express interest, please let me know. This might entail some organizational work on your part as directed by EURORDIS.



Dear EURORDIS member,

EURORDIS has established working relations with the European Medicines agency (EMA) since its very beginning in 1997.
The EMA has a long history of involving adult patients in its work and has systems in place for their participation across many activities; however this has not as yet included the involvement of young people and children.
There are ongoing discussions within the Paediatric Committee (PDCO) on the value and feasibility of involving these stakeholders and it has been proposed to establish a young persons network with the Patients and Consumers working Party (PCWP).

As the EURORDIS representative in the PCWP, I am calling for your help in identifying young people living with a rare disease who would be willing to become member of a network of young people within the umbrella of the PCWP.
This includes:
Identify existing youth groups across the European Union (diseases specific to people of less than 18 years of age)
or young people part of an existing organisation who would volunteer to be part of this network (yourself, your son, your daughter, niece, nephew...)
When young people are identified, we would like to propose them a training
on EMA work regarding (paediatric) medicines development and authorisation process, and opportunities for their involvement. The areas and methodologies for the involvement of young people within EMA/PDCO activities would include:
Define the most appropriate methods and tools for involvement of young people (e.g. written consultation, use of social media etc...)
Define the scope, frequency and type of situations which could benefit involvement of young people
If yourself are interested and less than 18 y.o., or if you know someone who could be interested, please fill-in this online questionaire: https://www.surveymonkey.com/r/Z2H9G39

Many thanks in advance!

Sincerely,

François Houÿez
Treatment Information and Access Director / Health Policy Advisor
www.eurordis.org
+331 56 53 52 10

EURORDIS Paris' Office- Plateforme Maladies Rares, 96 rue Didot, 75014 Paris - France

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br (MEBO Brasil)
diretoria@mebo.com.br
The MEBO Blog (English)
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NORD Member Organization
EURORDIS Member Organisation 



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A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

I would love to help but unfortunately I'm not under 18!

Oct 29, 2015, 7:37:00 PM
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