conference needed

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conference needed

Postby malory » Thu Sep 06, 2018 3:35 pm

Apparently, there was a TMAU conference in 2002.
https://rarediseases.info.nih.gov/asp/h ... 20315.html

Another one is surely well overdue and, in light of developments regarding different volatiles causing odour https://www.youtube.com/watch?v=AZ4xMVXhfxA, then it is definitely about time another conference was held.

Could we all email the following contacts requesting that a conference be held to discuss TMAU and metabolic odour disorders. We could use a different slant for each department as they focus on different things (mental health/genetics/digestive) and try to persuade that particular department of the importance of holding a conference. It would raise awareness if nothing else.

https://rarediseases.info.nih.gov/about ... ntact-gard
Contact GARD | Genetic and Rare Diseases Information ...
You can contact a GARD Information Specialist if you have a question about a rare or genetic disease. Information Specialists cannot make a diagnosis or give medical advice.
rarediseases.info.nih.gov
Kaufmann, Petra (NIH/NCATS) [E]
kaufmanp2@mail.nih.gov

National Human Genome Research Institute (NHGRI):
E-mail: https://www.genome.gov/10005049/questions-and-feedback


https://www.nih.gov/about-nih/ask-nih
Ask NIH | National Institutes of Health (NIH)
Please use this form to submit your comments and questions. We will do our best to respond within two business days. We regret that we cannot answer medical questions via the NIH Web site. Please consult a medical professional about your health condition ...
http://www.nih.gov

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK):
E-mail: healthinfo@niddk.nih.gov

National Institute of Mental Health (NIMH):
E-mail: nimhinfo@nih.gov

National Institute on Minority Health and Health Disparities (NIMHD):
E-mail: NIMHDinfo@NIMHD.NIH.gov

basic sample email:
It has been 16 years since a conference was held to discuss the metabolic odour disorder known as Trimethylaminuria. Given the highly increased number of sufferers of metabolic odour disorder such as Trimethylaminuria (TMAU), we feel that a conference to discuss this subject is long overdue.

Could you please let me know if this would be possible in the near future?
malory
 
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