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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 Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Wednesday, September 28, 2011

DIA conference on Rare Diseases and Orphan Drugs : Washington 11-13 October


The Drug Information Association is holding a conference in Washington DC this October 11-13 on Rare Diseases and Orphan Products.

Committee's Message

The Rare Diseases and Orphan Drugs Summit 2011 is the first annual program representing a collaboration among academic researchers, clinical researchers, pharmaceutical and biotechnology companies, regulatory and health agencies, patient organizations, payors and venture capital/private equity concerns to address the need for effective therapies for rare diseases. The Summit will provide a forum for all participants to share of state-of-the-art knowledge and to explore issues and needs from multiple perspectives. Through these dialogs, we hope to facilitate accelerated development of new therapies and improved access to these and existing therapies for rare diseases.

The goals of the program are to:

Provide education and updates on regulatory requirements and clinical trial issues relevant to rare disease research
Examine and discuss the changing and future orphan drugs landscape from the US and other regional regulatory perspectives
Discuss strategies for successful development, approval, authorization, and reimbursement of orphan drug products
Explore the benefits, approaches, and opportunities for patient partnerships in rare disease therapy development
Engage in open dialogs about challenges and concerns for rare disease treatment development
Encourage and Improve interactions among stakeholders across the full spectrum of the rare diseases community
— Peter L. Saltonstall, Wayne L. Pines, Deborah Dolan, Diane Edquist Dorman, & Trent McLaughlin

Survey for the conference

The conference has an online survey for people with rare disorders and will be drawing attention to the survey at the conference. You can fill out the survey on their special website


Systemic body odors are probably not that rare a disorder, but at the moment they are regarded as such, so this is a chance to show how common a problem it is. Then we can move on from it being classed a rare disorder.

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