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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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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

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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