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Denver TMAU Test Lab survey click here

click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, November 11, 2015

New RareConnect Discussion Group

A MESSAGE FROM ROB PLETICHA, RareConnect Project Manager:

RareConnect Discussion Groups have now launched!
The Discussion Groups will provide a platform to discuss transversal non-disease-specific issues related to living with a rare disease.

Thank you for your continued interest in EURORDIS’ activities,

Rob from EURORDIS

María de la Torre
Founder and Executive Director

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