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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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to join : go to
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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

Tuesday, March 17, 2015

UPDATE: 5th MEBO Annual Meetup/Conference Orlando 2015


Embassy Suites Orlando - North
I would really love to meet as many new faces and see my old friends again at our MEBO Annual Meetup and Conference Orlando, Florida. As I mentioned in the previous announcement, it will be held on the weekend of Friday, April 17th thru Sunday, April 19th. Of course, everyone is invited to stay through Monday or longer, and some frequently come one or more days earlier. The conference is always held on Saturday, and Sunday is a socializing field day, in which we go out as a group to see special sites.

Many have already expressed a desire for this meetup to be held at an Embassy Suites because it offers daily complimentary buffet breakfast and "Happy Hour" Manager's Reception from approximately 5:00pm to 7:00pm every evening. However, as the lower rates are currently getting booked, higher rates are becoming available. So, we have found alternatives for those who are looking for a lower rate, good quality nearby accommodations in order to easily join us for every part of the meetup/conference. Below are some alternatives, and you can see them on Google Map:


If you would like to join us this year, please make your reservations as soon as possible to get a good rate. The lowest online rates are nonrefundable, but for only just a little more, you can hold a reservation with your credit card, and it won't be billed until you check out. Check cancellation policy as well. If you live around the area, or want to stay at another hotel, you can still join us. Just let me know by emailing me at, so that we can arrange meeting with you. As usual, we hold the conference on Saturday at 12:00 noon, and then we can go to the Manager's Reception from approximately 5:00pm to 7:00pm.

The lake "Crane's Roost" and the Embassy Suites are within walking distance (next to the Altamonte mall), it is a one-mile loop park around a scenic lake. We can then go to any of the many restaurants at the Altamonte Mall, since it's only a few blocks away. Please look that the Altamonte Mall Directory, and give me suggestions of where you would like to have dinner together. You can also see other restaurants in the area that may be of interest, i.e., Chili's or Cracker Barrel Old Country Store, which have a menu with greater selection variety.

On Sundays after the conference, those who are able to stay usually do an outing in the town where the meetup is held. Some of you have recommended that we go to Epcot as a group, where we can enjoy the international pavilions and restaurants. However, the entrance fee is about $100 for one person/one day Pass. Others recommend to go to Downtown Disney, which is free of charge.

AIRPORT TRANSFERS Double check with the hotel you book to see whether they offer courtesy airport transfers, or what other form of transportation would be required.



Saturday, April 17, 2015 through Sunday April 18th.


Embassy Suites Orlando - North (4 star hotel) 225 Shorecrest Drive Altamonte Springs, FL 32701 407 834 2400

Online Reservations:

Book your room as soon as possible to get the lower rate! Or call their Reservations number and book over the phone, 866-460-7456. Please come and join me, so that we can spend some time together and chat. I look forward to meeting new faces and seeing familiar faces again!



María de la Torre
Founder and Executive Director

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