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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

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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

Friday, September 27, 2013

Webinar : Social Security Administration's Compassionate Allowances initiative


The Social Security Administration (SSA), considers TMAU a "severe impairment" listed under section 5.05 in SSA impairments. However; SSA will not grant a disability payment on TMAU alone, rather there needs to be a "mental" disorder as well.
Cheryl L. Fields, MBA, Ph.D. (ABD)
Human Resources Consultant
MEBO US Community Outreach Director

The following is a webinar hosted by the USA charity the National Office for Rare Disorders (NORD)

"On Wednesday, Sept. 18th, NORD hosted a teleconference on the Social Security Administration's Compassionate Allowances initiative. Peter Smith, a policy analyst with the SSA, provided an overview of this initiative and responded to NORD member questions, such as how SSA identifies diseases to add to the list and how patient organizations can provide input in this process."

The webinar can be watched below or on the NORD website : SSA CAL webinar



MEBO Research have previously submitted Trimethylaminuria to be added to the list of disorders on the Compassionate Allowance List, but it was rejected. MEBO are resubmitting a new request for TMAU.

The following is a quote from the accompanying email newsletter sent by NORD about the webinar :
We have received several questions from members on how to add their disease to the Compassionate Allowances list (CAL).  SSA has developed the list with significant input from a series of public hearings and information submitted by advocacy groups, medical and scientific experts, and others.  NIH has provided scientific guidance to SSA in this process.  A primary consideration is whether conditions meet the SSA definition of a disability.  That definition can be found here.
On the webinar, in response to a question from a NORD member about how to submit a disease for consideration for the CAL, the SSA team recommended using the format employed by SSA in its impairment summaries of diseases currently on the list.
To view these summaries, click on any disease name on the current list of Compassionate Allowances diseases.
For example, view the impairment summary for Acute Leukemia.
Members who have additional questions after viewing the webinar are encouraged to contact the Compassionate Allowances Team at compassionate.allowances@ssa.gov
NORD website : rarediseases.org


A Public Charity
MEBO Research
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization 

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