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

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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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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

Tuesday, July 10, 2012

FDA Safety and Innovation Act Signed

FDA Safety and Innovation Act Signed – A Monumental Step Toward the Development of Safe and Effective Treatments for Millions of Americans With Rare Diseases (via redOrbit)

Approval Culminates Years of Advocacy, Education and Relationship Building Led by NORD WASHINGTON, July 9, 2012 /PRNewswire-USNewswire/ — Signed by President Obama today, the U.S. Food and Drug Administration (FDA) Safety and Innovation Act includes the most groundbreaking measures for rare disease…

“This legislation represents true progress for people with rare diseases, who often face many struggles accessing treatments for their disorders,” said Peter L. Saltonstall, president and CEO of NORD. “Our heritage, understanding, leadership and commitment to the community uniquely position us to best understand the complexities and needs of people and organizations in the rare disease space. Today’s approval adds to NORD’s 30-year history of driving landmark legislation, which would not have been possible without the sustained efforts of our members and policy partners.”

Established in 1983 by patient advocates who successfully enacted the Orphan Drug Act, NORD has been an integral part of the development of the FDA Safety and Innovation Act since 2010. The Act will provide more than $6 billion in industry user fees to the FDA over the next five years to fund a share of the agency’s review of drugs and medical devices. Specific to the rare disease patient community, the Act provides the following:
  • Accelerated patient access to new medical treatments
  • The development of Humanitarian Use Devices, or medical devices for small patient populations
  • Accelerated development of “breakthrough therapies”–those that show early promise
  • Enhanced consultation with rare disease medical experts
  • A rare pediatric disease priority review voucher incentive program
  • Addresses concerns related to conflict-of-interest regulations for advisory committee members
“We are grateful for the hard work and input our member organizations and policy partners have contributed over the past two years–raising awareness among Congress, the FDA and the National Institutes of Health. NORD looks forward to continued collaborations and to support the issues that deeply affect the rare disease community,” said Saltonstall.

Source: redOrbit (

About Rare Diseases

A rare disease is any disease affecting fewer than 200,000 Americans. There are nearly 7,000 such diseases--of which only about 250 have FDA-approved treatments--affecting nearly 30 million Americans.

About NORD

Established in 1983, the National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. A nonprofit organization, NORD represents the 30 million Americans with rare diseases and is committed to the identification, treatment and cure of rare disorders through patient assistance, education, advocacy, research and service.

For more information, please visit

SOURCE National Organization for Rare Disorders (NORD)
For more information: See BIOtechNOW

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