Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out


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

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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 6, 2014

NORD letter to Congress: Don't Repeal Orphan Drug Tax Credit

MEBO IS A NORD RARE DISEASE PATIENT ORGANIZATION, and as such, have signed onto NORD's letter urging Congress not to repeal the Orphan Drug Tax Credit. As NORD explains,

This issue is critically important to all people affected by rare diseases. The Orphan Drug Tax Credit is a major incentive, created as part of the Orphan Drug Act of 1983, to encourage the development of treatments for people with rare diseases.

A draft tax reform proposal recently released by the leadership of the House Ways & Means Committee would repeal this important tax credit.

It is NORD's position -- on behalf of the entire rare disease community -- that repeal of this tax credit would be anti-patient and anti-public health policy. It would squelch innovative medical research seeking lifesaving therapies for patients who currently have few or no treatment options.

Please join NORD in this important endeavor. Add your organization's name to NORD's letter today to tell Congress the Orphan Drug Tax Credit is important to you!


March 2014
The Honorable Ron Wyden, Chairman
U.S. Senate Committee on Finance
Washington, D.C. 20510

The Honorable Orrin G. Hatch, Ranking Member
U.S. Senate Committee on Finance
Washington, D.C. 20510

The Honorable Dave Camp, Chairman
U.S. House Committee on Ways & Means
Washington, D.C. 20515

The Honorable Sander Levin, Ranking Member
U.S. House Committee on Ways & Means
Washington, D.C. 20515

Dear Chairmen Wyden and Camp and Ranking Members Hatch and Levin:

A proposal made public by Chairman Dave Camp (R-Michigan) to amend the Internal Revenue Code of 1986 would repeal the Orphan Drug Tax Credit, one of the most successful tax credits ever passed by Congress, and one that has literally saved thousands of lives. The National Organization for Rare Disorders (NORD) and the {NUMBER} undersigned patient organizations oppose this proposed repeal.

Repeal of this tax credit would be an anti-patient, anti-public health policy, and would squelch medical research and innovation. Repeal would remove one of the major incentives to finding cures and treatments for some of the most challenging diseases.

The credit allows drug manufacturers to claim a tax credit of 50% of certain research costs for orphan drugs (drugs for diseases affecting 200,000 Americans or fewer). Due to this Orphan Drug Tax Credit, as well as other incentives, more research is taking place for orphan drugs than ever before. A third of the new drugs being approved by FDA each year are orphan drugs that benefit from the tax credit. Many if not most of these new drugs may never have been developed if this tax incentive did not exist.

The vast majority of people with a rare disease pray every day for medical progress. About 7,000 rare diseases affect 30 million Americans. Only a few hundred rare diseases have an approved drug.

People in this country with rare diseases deserve to be treated with respect and to retain the hope that, someday, a cure or better treatment will be developed for them. Repealing this tax credit is a signal from the Congress that new treatments for people with rare diseases are unimportant. NORD appeals to Congress to block this proposed repeal and to keep the light of hope on for so many who desperately need life-saving interventions.

Orphan drugs don’t serve just patients with rare diseases. Patients with more common diseases have benefited from the advancements made in orphan drug development. Access to these treatments has saved medical costs by keeping people healthy and out of the hospital and emergency rooms. New treatments promise to save even more.

NORD and the entire rare disease community urge Congress to reconsider the implications of repealing the Orphan Drug Tax Credit as proposed by Chairman Camp, and to keep patients and public health first.

For additional information, contact Diane Edquist Dorman, Vice President, Public Policy, National Organization for Rare Disorders (NORD),, (202) 588-5700 ext. 102.

Members of the U.S. Senate Committee on Finance
Members of the U.S. House of Representatives Committee on Ways & Means


María de la Torre
Founder and Executive Director

A Public Charity (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

get New Posts by EMAIL : Enter your email address :

A EURORDIS and NORD Member Organization


Post a Comment