Trimethylaminuria discussed on 'The Doctors' TV Show

Trimethylaminuria (TMAU) was discussed on USA daytime TV program 'The Doctors' on May 16th. Here is the youtube video the program put up about it. Interesting to see one doctor also mention that often the complaint was not of rotten fish malodor, but of feces and other unpleasant malodors. The opening sequence also made mention of this.

The Doctors discuss TMAU

Survey on Access to Care for Individuals with Genetic Conditions

MEBO Research has received an email from the Program Manager of the National Genetics Education and Consumer Network (NGECN), Genetic Alliance. She is asking for volunteers who have been daignosed with having a genetic condition to fill out a survey by Thursday, June 6, 2013. Below is a copy of the email.

Good afternoon,

We are reaching out to you for your help in disseminating a survey to your members with genetic conditions and their families and anyone else who may be eligible and interested in participating. To be eligible, respondents must have been told by a doctor or other health care provider that they (or their child) have a genetic condition.

Genetic Alliance, in collaboration with the American College of Medical Genetics (ACMG) and the Health Resources Services Administration (HRSA), is conducting this survey to assess how individuals with genetic conditions access health care and support. The data will be very helpful in painting a picture of health care experiences of individuals with genetic conditions and their families, and will provide direction for future programmatic efforts with the goal of improving access and health.

We ask that you share this message and the survey link below and request that individuals complete the survey by Thursday, June 6, 2013.
https://www.surveymonkey.com/s/SurveyAccesstoCare

If you have any questions about the survey or use of the data, please contact Sharon Romelczyk, Program Manager at sromelczyk@geneticalliance.org. This project has been approved by Genetic Alliance’s Institutional Review Board (IRB) to protect all survey respondents and ensure that all responses will be kept confidential.

Thank you,


Sharon

Sharon Romelczyk, MPA
Program Manager
National Genetics Education and Consumer Network (NGECN)
Genetic Alliance

María


María de la Torre
Founder and Executive Director

  A Public Charity
www.meboresearch.org
  maria.delatorre@meboresearch.org
  MEBO's Blog (English)
  El Blog de MEBO (español)
  The MEBO Forum

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A EURORDIS and NORD Member Organization

What is, and Who is MEBO?

Who is MEBO? There are a few sufferers who have told me that sufferers who just discovered our community don't know who MEBO is. MEBO is a sufferer founded 501(c)3 Public Charity registered in the US, England and Wales. the 10 Directors (5 in US and 5 in UK) offer their volunteer services, as do other sufferers and experts. There are a few experts in multiple countries who donate their time and work pro-bono to educate and guide us.

What is MEBO's Mission? To promote and initiate research into ALL TYPES of body and breath odor conditions to obtain a greater understanding of the causes, for the experts to arrive at a targeted therapy for each type of condition that results in body odor and halitosis. Since years go by with no government funding for research, MEBO has launched a raising awareness campaign to solicit research grant funding. In addition, instead of waiting around at the mercy of those who can fund our research (but don't), MEBO has initiated, and will continue to initiate, a few sufferer-funded research projects, under the supervision of experts and the MEBO Institutional Review Board to protect the rights of participants.

Basically, MEBO is the only organization in the world that focuses a great deal of attention and research efforts to understand the cause(s) of body and breath odor conditions of the 70+% of sufferers who get negative results on their TMAU Test.

Basically, MEBO is the only organization in the world that focuses a great deal of attention... on the 70+% of sufferers who get negative results on their TMAU Test.

MEBO also strives to compile scientific and medical information, such as articles in professional journals and books, and post them in the MEBO Blog, www.meboblog.com in addition to webinars, interviews, powerpoint presentations, and handouts given to MEBO expressly for our community by experts around the world that support our cause. Some of these can be found in the latest MEBO blog post,
Agenda for the 4th Annual MEBO Conference 2013.

María


María de la Torre
Founder and Executive Director

  A Public Charity
www.meboresearch.org
  maria.delatorre@meboresearch.org
  MEBO's Blog (English)
  El Blog de MEBO (español)
  The MEBO Forum

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A EURORDIS and NORD Member Organization