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Tuesday, January 15, 2013

What is RareConnect.org?

RareConnect.org is a partnership of EURORDIS and NORD that aims to connect rare disease patients globally. There are three Partners and Patient Groups in the Trimethylaminuria Community:

EURORDIS is the European Organisation for Rare Diseases, “the voice of 30 million people affected by rare diseases throughout Europe…is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.”

NORD is the National Organization for Rare Disorders, “a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.”

WEBINARS sponsored by RareConnect: Thanks to Rob Pleticha’s, Eurordis Online Community Manager, dedicated hard work, RareConnect provides the Webinars Series for our community. RareConnect will be hosting the next webinar on February 1st. For additional information on this presentation and how to attend, please see the post in this blog.

FIRST WEBINAR OF 2013
February 1, 2013, United States : at 5pm GMT/noon EST: Drs. George Preti, Paul Fennessey, and Danielle Reed on TMAU webinar with George Preti, Paul Fennessey, and Danielle Reed,
  1. Updates on genetics of TMAU (Dr. Reed), and
  2. TMAU : evaluation of individuals with malodor problems (Preti, Fennessey, Reed).

WEBINARS OF 2012
December 2, 2012, New Zealand : Dr. Richard Mackay on Laboratory testing for trimethylamine excretion

October 28, 2012, London : Dr. Robin Lachmann & dieticians, Heidi Chan and Charlotte Ellerton on Diagnosis and Treatment of TMAU – The London Experience

September 23, 2012 London : Drs. Elizabeth Shephard and Ian Phillips on FMO3: bugs, genes and drugs.


María

María de la Torre
Founder and Executive Director

A Public Charity
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A EURORDIS and NORD Member Organization

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