MEBO Research, registered Patient Organization in ORPHANET

MEBO RESEARCH IS PROUD TO BE
A REGISTERED PATIENT ORGANIZATION OF

ORPHANET
There is no disease so rare
that it does not deserve attention

Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.



Orphanet services:
Orphanet offers a range of freely accessible services:

1. An inventory of rare diseases and classification of diseases
2. An encyclopaedia of rare diseases
3. An inventory of orphan drugs at all stages of development, from EMA (European Medicines Agency) orphan designation to European market authorisation.
4. A directory of specialised services, providing information on specialised clinics, medical laboratories, ongoing research projects, clinical trials, registries, networks, technological platforms and patient organisations, in the field of rare diseases, in each of the countries in Orphanet’s network.
5. An assistance-to-diagnosis tool
and many more

Orphanet offers a listing of Support Groups by Country, and a page listing all the labs in Europe that test for TMAU, and other websites.

MEBO Research is listed under the Disease group of Trimethylaminuria,

Orpha number ORPHA35056 Synonym(s) Fish-odor syndrome Prevalence Unknown Inheritance Autosomal recessive   Sporadic Age of onset Variable

ICD-10 E88.8 OMIM 602079 UMLS C0342739 MeSH C536561 MedDRA 10068233 SNOMED CT 237959005

Another site in which information can be found on Trimethylaminuria is the Metabolic and Genetic Information Center,
This page references an article, The Clinical utility gene card for: Trimethylaminuria, written in the European Journal of Human Genetics (2012) 20, doi:10.1038/ejhg.2011.214; published online 30 November 2011, by MEBO's Scientific Advisor, Drs. Elizabeth Shephard, and colleagues, Drs. Ian R. Phillips and Eileen P Treacy. We thank Drs. Shephard, Phillips, and Treacy for their unending support and guidance to MEBO Research through the years.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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