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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

Scroll down and select country
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

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

MEBO TMAU Videos

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

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

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

Tuesday, February 23, 2016

World Rare Disease Day: Feb 29, 2016

2016 ANNUAL RARE DISEASE DAY
be a part of the experience

All are welcomed to get involved in this year's World Rare Disease Day on Monday, February 29, 2016! Join the movement! Advocate for the over 350 million with a RARE disease today! Click here to see how to get involved.



World Rare Disease Day is an annual observance to raise awareness for rare disease and improve access to treatments and medical representation for individuals with rare disease and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 9th annual World Rare Disease Day will be held on Monday, February 29, 2016. On this day, various activities take place globally.

Last year, volunteers from our community participated in this annual event by telling their story in the 'Share Your Story Through Social Media' part of this event.

There are millions of technology users who access social media everyday, this makes social media one of the best avenues to share your story and spread awareness. The new RAREToolkit: How to Promote Your Rare Disease Story Through Social Media will provide hands on tips and how-to's, from how to use some of the most popular platforms available to, how to effectively share your story through them. Check it out here.

Social Media Awareness - Patients, advocates, and industry alike can grow social awareness by sharing photos, information and events with Global Genes' FacebookTwitter, and Instagram. Supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2016, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.

NORDEurodis

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

2 comments:

Anonymous said...

If rare disease day raises money then have they or will they give some grants to tmau research?

Feb 24, 2016, 4:42:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

By offering rare disease communities to raising awareness, this event assists the Trimethylaminuria community in getting publicity in hopes that we can raise our own funding for research.

The money that is raised by them is used for lobbying efforts to have laws passed to help Rare Disease patients and their communities achieve their goals. For example of some of these efforts, please click on the following link and scroll down to read all posts.

http://www.bloodbornebodyodorandhalitosis.com/search/label/NORD%20e-News

Feb 29, 2016, 3:01:00 PM
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