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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org

MEBO Private Facebook Group
to join : go to
or contact
Ubiome Gut EXPLORER
10% OFF
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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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Blog Archive

Saturday, September 28, 2013

Online help is vital for rare disease odor sufferers


rare diseases are strikingly similar: on average 7 years to get a diagnosis, lack of specialists, being labelled a hypochondriac, no effective treatments available, and not recognized or understood very well by society.
Tania Tirraoro started the blog, SPECIAL NEEDS JUNGLE, to help parents “who are entering the jungle of special needs education.” In this blog, she shares her experiences as she advocated for her two sons with special needs.

On September 27, 2013, Robert Pleticha, the Online Communities Manager for RareConnect, and columnist for Special Needs Jungle (SNJ) wrote a post in this blog, Why online help is vital for people living with a rare disease you can only smell. In this article about living with Trimethylaminuria, Rob depicts the detrimental psycho-social impact this condition has on sufferers, since TMAU tends to first appear in adolescence, a crucial stage of a person's development.

Rob presents statistics provided by EURORDIS that depicts why TMAU is considered a rare disease.


About rare diseases

A disease is defined as rare in Europe when it affects less than 1 in 2000 people. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000. (Source: EURORDIS) Due to under diagnosis and misdiagnosis, we really can’t be sure of the number of people living with many rare diseases. We think of rare diseases as disparate conditions with names like: Epidermolysis bullosa, Dravet syndrome, or Familial Mediterranean fever. But the challenges people living with some of the 6,000 rare diseases are strikingly similar: on average 7 years to get a diagnosis, lack of specialists, being labelled a hypochondriac, no effective treatments available, and not recognized or understood very well by society.
By Robert Pleticha, September 27, 2013

Thanks, Rob, for presenting our case.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)






A EURORDIS and NORD Member Organization 

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