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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

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MEBO survey for Dr Hazen click here
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Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

MEBO Research Clinical Trials

Wednesday, May 30, 2012

The FDA Reform Act of 2012 passed today

May 30, 2012, WASHINGTON, DC--- The Food & Drug Administration Reform Act of 2012 (FDARA) was passed today by the U.S. House of Representatives. This bill contains numerous provisions that will enhance the review of promising new therapies for unmet medical needs, support the Rare Disease Program at FDA, and modernize the regulation of devices for use by small patient population.



The legislation contains the most comprehensive improvements to public policy for rare disease therapies since the Orphan Drug Act and also reauthorizes the user fees that support FDA review of new medical products.

“Today we join our allies throughout the health care community in thanking Chairman Upton and Ranking Member Waxman along with other House leaders for working together over many months to pass this momentous legislation,” said Peter L. Saltonstall, NORD President and Chttp://www.blogger.com/img/blank.gifEO. “It is ultimately patients and their families who will benefit most from the substantive policy in the Food and Drug Administration Reform Act of 2012. These reforms, once agreed to by both chambers of Congress and signed into law by the President, will herald even greater investment and innovation in the development of rare disease therapies.”

Read NORD's press release on the Senate Bill.

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