Admin Control Panel

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

Labels

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

Wednesday, September 24, 2014

Treatment Access 2014 Campaign

The European Organisation for Rare Disease asked MEBO to invite members of our community to report difficulties in accessing care before 30 September 2014 by filling out their anonymous questionnaire. Concise, short and accurate answers are preferred. Please be a participant in this campaign. Below is the message MEBO received from EURORDIS asking for volunteers.


Click
https://www.surveymonkey.com/s/H2SM3P9


The 2014 campaign ends in a few days 

Invite your members to report difficulties in accessing care 

before 30 September 2014!

Treatment
Access Campaign!



Are you facing difficulties accessing your treatment? Please report them to us
We would appreciate if you could take a few minutes to complete this anonymous questionnaire. Concise, short and accurate answers are preferred. Please take your time.
The collected data will be processed by trained staff in order to point out (via the reports which will be available) the existing problems to the National Health authorities and engage in a dialogue with them. We do not have the resources to respond to individual cases.
We will not communicate the results directly to you, but you will be able to read the outcomes of this campaign on the EURORDIS website (a specific "Access Campaign" page will be created). Thank you for your time. 

EURORDIS
EURORDIS - Rare Diseases EuropeFounded in 1997, the European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe. EURORDIS represents over 600 rare disease patient organizations in more than 50 countries, covering more than 4000 rare diseases (for more information: www.eurordis.org

Click

https://www.surveymonkey.com/s/H2SM3P9

François Houÿez
+331 56 53 52 18
Director of Treatment Information and Access
European Organisation for Rare Diseases
www.eurordis.org 


María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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.


Please use your credit card to make your donation to MEBO.


Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner

0 comments:

Post a Comment