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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

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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

Thursday, March 29, 2012

MEBO Research is a National Member Organization with NORD

MEBO's NORD Membership
Application is Approved

I am most excited to announce that NORD's Board of Directors has approved the application for MEBO Research, Inc., as one of NORD's member organizations. As a National Member Organization,we are now proud to be on the "CURRENT LIST OF MEMBER ORGANIZATIONS," and as such, we are encouraged by NORD to display the NORD's Member Organzation Logo on our website and blogs.

As a member of the NORD membership community, we join the conversation and bring the power of more voices together to achieve mutual goals on behalf of patients and families affected by rare diseases. With broad representation on a geographic and disease-specific basis, NORD can have greater influence on advocacy efforts that benefit all patients with rare diseases.

  1. Advocacy
  2. Policy Development
    • NORD maintains an aggressive public policy agenda that continues to focus on such key issues as maintaining Health Care insurance reforms and elimination of annual and lifetime caps, expanding SSA Compassionate Allowances, achieving coverage of medical foods, and supporting development of new therapies
  3. Critical Issues Analysis: NORD provides members with analyses of legislative and regulatory activity and public policy that will impact the rare disease community
  4. Education: Member organizations are supported with ongoing educational webinars on policy issues and the public policy process, as well as access to senior level representatives within the FDA, NIH, CMS, and other governmental agencies.
  5. Opportunities to Connect: NORD provides member organizations with the opportunity to connect and gain access to the knowledge base within the membership community and to learn and share best practices on issues of similar concern. These can be related to public policy, or to developing their organization, building capacity and meeting the needs of the patients they represent.
  6. Research Support: NORD supports the research efforts of member organizations through information-sharing related to sources of research funding. NORD also administers a limited number of research grants.
  7. Member Organization Visibility: NORD partners with its members to create greater awareness for them throughout all NORD communications materials and the website, through listing of member activities and events, and attendance at select medical meetings. Patients who contact NORD are also referred to the appropriate member organization.
  8. Voting Privileges: National Member Organizations are eligible to vote for the NORD Board of Directors, as well as on agenda items at the NORD annual meeting.

In order to qualify for National Membership, MEBO had to fill the following qualifications:
  1. Proof of 501(c)(3) tax exempt non-profit status...
  2. Dated by-laws with Mission statement compatible with NORD's goals of being patient-centered, and advocating on behalf of patients in the rare disease community.
    • Names and addresses for a minimum of five board members. MEBO currently has five (5) registered board members in the United States. Although for this National Member Organization application only the listing of the board members of the US charity were required, MEBO also enjoys the support of an additional five (5) member Board registered in England and Wales.
    • Minimum of three (3) medical/scientific advisors in place. MEBO is most grateful to the following five (5) experts who consented to be our Medical / Scientific Advisors,

        John R. Cashman, Ph.D. President and Founder Human BioMolecular Research Institute (HBRI) Professor Elizabeth A. Shephard Vice Dean Education, Biosciences Institute of Structural and Molecular Biology Division of Biosciences Darwin Building UCL Genetics Institute University College London Nigel Manning Principal Clinical Scientist Department of Clinical Chemistry Sheffield Children's Hospital Sheffield, England Irene Gabashvili, Ph.D. Director, Scientific Advisor MEBO Research, Inc. Colin Harvey-Woodworth, BDS Director, Scientific Advisor MEBO Research

    • Annual Budget approved by the Board.
  3. Policy Requirements:

    • Policies on conflict-of-interest for Board and Staff
    • Privacy policy that protects the identity of patients and families.

In support of MEBO's Privacy policy, MEBO Research, Inc., has formed and registered an Institutional Review Board (IRB) to oversee all of MEBO's studies involving human subjects to assure that the Federal Policy for the Protection of Human Subjects are adhered to.

It has been, and will continue to be, MEBO Research's focus to establish a strong foundation upon which our international community of sufferers can rest to find organizational strength in order to bring about substantial changes to sufferers' lives by initiating research to find the proper treatment for all types of body odor conditions, including rare diseases, such as TMAU and other yet-to-be-defined genetic conditions that result in chronic and difficult to control body and breath malodor.


María de la Torre
Founder and Executive Director

A Public Charity
MEBO's Blog (English)
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Anonymous said...

That's great news


Mar 29, 2012, 3:57:00 PM
Pete said...

Great work to everyone in the community especially Maria. Hang in there everyone we are making progress. Im sure in a few years time we will be cured.

Mar 31, 2012, 4:08:00 AM
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