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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

Full details :
want listed ? contact

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, December 12, 2013

Reply to Raising Awareness Mailout

Thanks to everyone who took part in e-mailing the UK Health MPs.
The reply I received is below:

Dear Ms James,

Thank you for your correspondence of 28 November about Trimethylaminuria (TMAU). I have been asked to reply.

I appreciate your concerns about the strategies in place for dealing with rare diseases such as TMAU.

The Department is committed to increasing awareness of rare conditions such as TMAU, and that commitment has been demonstrated through the UK’s involvement in theUK Plan for rare diseases. The Plan will set out a coherent and joined-up approach to tackling rare diseases and will bring together a number of recommendations designed to improve the co-ordination of care and to lead to better health outcomes for everyone with a rare disease. It will also acknowledge existing developments, such as the contribution that expert centres can make to better diagnosis and treatment of rare diseases, while proposing a number of further developments, such as better information for patients so that they can be fully engaged and helped to understand and manage their conditions.

The Plan will include recommendations, actions and examples of best practice for commissioners of specialised services, Royal Colleges, information providers and front-line staff who deliver care to people with rare diseases. In England, much of the implementation of the Plan will be for NHS England in its role as a single national commissioner of specialised and highly specialised services.

You may therefore wish to contact NHS England for further information on the implementation of the Rare Disease Plan and how this may affect services for TMAU. You can contact NHS England by email at or by post at the following address:

NHS England
PO Box 16738
B97 9PT

I hope this reply is helpful.

Yours sincerely,

Jane S.


It would be a good gesture if people from our community e-mailed the MRC to express our thanks for the TMA research grant
It would be a good gesture if people from our community e-mailed the MRC to express our thanks for the TMA research grant. This would still be a raising awareness campaign and an excellent follow-up to the original campaign requesting the grant.

Contact e-mails are:

Many thanks and have a great Christmas holiday,

Public Relations Director

A Public Charity (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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