As a registered not-for-Profit company in England and Wales since 2009, and a registered Public Charity in the United States since 2010, MEBO has done its best to raise awareness by being a participant, one way or another, in most of the government and private entities that have published information of TMAU, such as,
1. Organization Member of NORD, National Organization of Rare Disorders in the United States
2. MEBO Research UK is an Organization Member of EURORDIS, The Voice of Rare Disease Patients in Europe http://www.eurordis.org/about-eurordis
3. RARE CONNECT: Eurordis is an "Initiative Connecting Rare Disease Patients Globally". All sufferers around the world are welcome to join Trimethylaminuria Community of RareConnect. Some moderators of this site are MEBO Directors.
4. ORPHANET : MEBO Research, UK
Orphanet has a link to the UK Medical Research Council funded (£358,000 GBP, equivalent to 422K/Euros or 552K/USD) research project performed by Dr. Elizabeth Shephard for a "Therapy for the body and Breath malodour disorder Trimethylaminuria (TMAU).
5. GENETIC ALLIANCE MEBO Research UK
As promised in the MEBO Mission Statement, MEBO is not only focused on TMAU research and treatment, but is also very committed to the pursuit of research to identify other forms of odor conditions. Therefore, the MEBO Metabolomic Profiling Pilot Study was launched in Edmonton, Canada with Dr. David Wishart (PhD Yale, 1991) at the Wishart Lab, University of Alberta. It is a registered research project with the ClinicalTrials.gov, Trial NCT02683876. (See updates.)
Click to see Info Pack |
Patient Involvement : Research
María de la Torre
Founder and Executive Director
A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)
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