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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

Friday, April 17, 2020

NORD WEBINAR: COVID19 Critical Relief Program

BREAKING NEWS: 

NORD launches COVID-19 non-medical assistance fund


At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, NORD opened the COVID-19 Critical Relief Program on Wednesday, April 15. This program provides support to rare disease patients and families facing financial challenges in affording critical, non-medical expenses.

Through this new program, NORD will provide financial assistance to eligible patients impacted by the COVID-19 pandemic, with financial assistance for unexpected or emergency, essential expenses such as:

Unexpected utility expenses
Communication expenses (e.g. phone, cell phone, internet)
Emergency repairs to car, furnace, home or major appliances
Assistance with travel and/or lodging logistics and expenses
Rent or mortgage payment assistance
Support for adaptive learning during school closures
Those interested in the program can reach out to NORD for more information and to find out if they meet eligibility requirements at 203.242.0497 or COVID19assistance@rarediseases.org.


Webinar: Called to Action: NORD's Response to COVID-19
For more than 37 years, NORD has focused on improving the health and well-being of people impacted by rare diseases. As the world is confronted by the COVID-19 pandemic, NORD is responding to the evolving needs of the rare community. 
Please invite patients, caregivers, medical professionals and all stakeholders in your community to join NORD for a free 30-minute webinar to hear about how people with rare diseases are being affected by the pandemic and for an update on NORD initiatives and resources related to this public health crisis.

When: Tuesday,

April 21, 3:30 - 4:00pm ET


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A EURORDIS and NORD Member Organization

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