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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


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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

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
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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

Tuesday, July 24, 2012

No specific funding for rare diseases in UK in general

halitosis researchOne of the benefits of being involved with EURORDIS and NORD, is that one has access to a great deal of information about the latest research efforts and the political arena that determines which research projects get off the ground or not. The following are excerpts of an article entitled, A disappointing consultation on the UK plan for rare diseases, posted in the EU Rare Disease blog on March 7, 2012, featured in Rare Disease Blogs, a joint EURORDIS/NORD project publishing International opinion on Rare Diseases & Orphan Drugs. It is written by Dr. Nicolas Sireau, Chairman of the AKU Society, a medical charity that works in partnership with the Royal Liverpool University Hospital to find a cure for AKU.

No specific funding for rare diseases
The first disappointment was that I couldn’t find anywhere a commitment to specific funding for rare diseases. While the second French national plan allocates €180 million towards rare diseases, there’s no mention in the UK consultation document of any UK budget for rare diseases…

Not much on research
The third disappointment was the research section, which is one of the shortest sections of the document, yet the area most in need of investment in the UK.
It starts by saying that ‘the UK is at the cutting edge of research into rare diseases’. This may be the case, but it’s definitely not because of any concerted government funding.
That’s why the following sentence is so grating: ‘Research is carried out by universities, the NHS, and other organisations. It is funded by Government.’
As anyone in the UK working in rare disease research knows, there is no funding available from the government specifically for rare diseases. Having spoken to several government funding agencies, I can tell you that rare diseases are at the bottom of their priority list. They made it clear to me that rare diseases cannot compete successfully for funding against common diseases such as cancer or heart disease.

Nick Sireau

Readers are welcome to write comments on this post here , (scroll down to the bottom to write your comments).
You can download the consultation on the UK national plan for rare diseases here.

So what strategy should we take? So strive to proactively participate in NORD and EURORDIS by uniting with projects that serve common goals, being aware of the latest developments in government policies and procedures, and never letting the UK and US governments forget that we are still around.


María de la Torre
Founder and Executive Director

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