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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

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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

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to join : go to
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BO Sufferers Podcasts

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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
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, June 21, 2011

Meetup in Maryland with Cheryl Marshall

Message from Cheryl Marshall:

Informal support group meeting

for people with Trimethylaminuria / Other medical malodor disorders

We will be in Washington DC / Bethesda Maryland area to attend a Genetic Alliance conference. The night before the conference begins, we will host an informal support group meeting as a way to get together with some of the people in the tri-state area who are living with malodor conditions and would like to come together informally to meet others facing the same challenges.

When: Thursday evening, June 23rd, at 6:30 p.m.

Where: Please meet us in the lobby of the Marriott Hotel

(there are couches in the lobby, to the left of the entry way).

Bethesda North Marriott Hotel & Conference Center

5701 Marinelli Road, Bethesda, Maryland

Phone: 1-506-474-2009

Please check with the MD Metro system for directions by train but I believe the stop is 'White Flint'.

There is no cost to attend.

RSVP / contact us at:

Trimethylaminuria Foundation

Cheryl Marshall, Director

Ph: 561-386-9515

7040 Seminole Pratt Whitney Road

Loxahatchee FL 33470

Please leave a message to let us know if you plan to attend; leave your name and contact phone number so that we can get in touch with you.

If you plan to attend, you must call us to RSVP and provide us with your contact information so that, if plans change, we can notify you of the change. We will also contact you with specifics regarding the meeting place once we know how many people will be in attendance. Please do not "just show up" and ask for us at the hotel's front desk (as the hotel will know nothing about this) and we’d appreciate your being on time if you want to join us.

Looking forward to meeting old friends and making new ones!!

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