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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)

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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

Thursday, August 3, 2017

Senate Passes FDA Reauthorization Act of 2017

MEBO Research was an active organization supporting the passage of the FDA Reauthorization Act of 2017.  We are most pleased to have had the opportunity of joining the other rare diseases organization members of NORD in encouraging our legislators to pass this great bill.  It may very well work towards getting a therapeutic treatment for TMAU  become more readily available to our community than it would have before this bill was passed.  We thank everyone at NORD who organized this effort for making this come to fruition.

María

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017
Washington, D.C., August 3, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of the Food and Drug Administration Reauthorization Act of 2017:

“Today the Senate joined the House in overwhelmingly passing the Food and Drug Administration Reauthorization Act (FDARA). NORD applauds the Senate’s bipartisan commitment to the individuals with rare diseases who rely on the Food and Drug Administration (FDA) to ensure the delivery of safe, innovative, and effective treatments.

The FDA user fee agreements passed today as part of FDARA are the result of months of negotiation between FDA and the medical product industry, with significant input from the patient advocacy community. Among other provisions, these agreements include the expansion of the FDA Rare Diseases Program; strengthening of the expedited review pathway for breakthrough therapies; development of a process through which real-world evidence can be utilized; continuation of the Patient-Focused Drug Development program; and the creation of the National Evaluation System for health Technology (NEST).

We actively support FDARA and the benefits it will bring to the rare disease community. By reauthorizing the user fee agreements, the Senate has acted to protect rare disease patients and prevent the forestalling of advancement at FDA. We thank the Senate for taking this important step, and we ask that President Trump sign FDARA into law as expeditiously as possible.” 
View all of NORD's recent policy statements by clicking here.
Sign up to receive policy alerts from NORD here.
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. www.rarediseases.org.


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A EURORDIS and NORD Member Organization

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