Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out


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

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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

Friday, February 27, 2015

Send An E-Letter - Rare Disease Day Events

Raise Awareness - Send an E-Letter


Take action this Rare Disease Day

This Rare Disease Day, one of the most important things you can do is to urge your elected officials to support policies that will help individuals and families living with rare diseases.With a few easy steps you can make sure your voice is heard. Follow the link above or below, which will enable you to send a letter directly to your state and federal representatives.
Click here to send an e-letter.

Thank you for your time and for your support.


Peter Saltanstall, NORD President and CEO

P.S. To learn more about NORD's state advocacy initiatives, or if you just have questions, please contact us 

Rare Disease Day Events

Send An E-Letter

On February 28th, the rare disease community comes together on Rare Disease Day to celebrate the achievements we have made, while also recognizing the many challenges that we face. One of the most important things you can do is to make sure your elected officials know that:

• rare disease issues are important to you;
• individuals and families living with rare diseases must cope with significant challenges;
• you are an active participant in the political process.

Please enter your zipcode below to access a letter to send to your elected officials. If they ask
for the topic of your email, please choose "health" or "healthcare". Also, please edit the letter as you see fit in order to ensure your elected officials have heard your
In order to address your message to the appropriate recipient, we need to identify where you are.
Please look up and use your full nine-digit zip for the best results.
Please enter your zip/postal code here.
We respect your privacy. We will never share your information unless you request for us to do so.

- See more at:

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Use your credit card to make your donation to MEBO.

A EURORDIS and NORD Member Organization 


Post a Comment