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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

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:

Many thanks in advance!


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

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


María de la Torre
Founder and Executive Director

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A EURORDIS and NORD Member Organization


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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