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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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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

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)
El Blog de MEBO (español) 
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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