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Thursday, August 9, 2012

Series of FMO3/TMAU webinars from researchers and experts

Click for TMAU webinar news
Series of webinars featuring experts and researchers who have an interest in FMO3 enzyme and/or Trimethylaminuria

To be hosted by Rob Pleticha, Online communities manager of Rare Connect

In co-ordination with members of the TMAU/metabolic malodor community

Hotsing platform is Adobe Connect, provided by Rare Connect (flashplayer needed to view)

Webinar series is currently planned to be held on Sundays around 6pm UK time. All are welcome.

Unfortunately only an audience of 50 can attend.

First Webinar : 19th August : The People's Webinar
2 speakers from the community and Rob will talk. The webinar will be used to try out the technology. The webinar will be recorded for public viewing afterwards.

For full details see the TMAU page on the Rare Connect website
Rare Connect TMAU/FMO3 webinars

Rare Connect adobe connect room for TMAU/FMO3 webinars

pre-questions for the 19 Aug webinar : Post on the Rare Connect TMAU forum



Invitation text

A Rare Connect and TMAU community joint initiative

RareConnect and members of the TMAU community are pleased to announce a series of webinars from experts/researchers of Trimethylaminuria (TMAU) and the Flavin-containing mono-oxygenase 3 enzyme, to be hosted on Sundays, beginning on Sunday August 19th at 6pm GMT (UK time),  with a presentation from members of the TMAU community and Rob Pleticha, Online Communities Manager at EURORDIS presenting the TMAU Community.

The webinars will be recorded and archived for viewing at anytime.

Details for the first webinar are below :

Sunday, August 19th 6pm GMT
The ‘People’s webinar’  
The first webinar will have guest speakers from members of the TMAU community, along with Rob from EURORDIS who is hosting the webinar.
Each guest will speak for about 10-15 mins then will be open to questions from the viewers. The guests for this first webinar are :

Robert Pleticha : Online Communities Manager at EURORDIS describes the International TMAU Community on RareConnect

Karen : Popular community member and UK campaigner on metabolic malodors will provide a talk : “Is it possible to use the media effectively in odour sufferers' struggle for human rights”

Cheryl Fields : Long-time friend and helper of the TMAU community. Will provide a talk : “Having The Power To Endure:  Obtaining & Retaining Employment With TMAU"

Notes about the webinars :
The platform for the webinars is Adobe Connect. This means you need flashplayer installed, which is very likely already done if you can view YouTube videos. All slides will be viewable in the webinar meeting room and all audio will be from the computer. Meaning you need speakers or headphones working properly to hear the presenters. If you would like to ask a question or make a comment, you may do so by your computer’s microphone or through a text chat box.

To test your computers settings before the webinar, visit: http://helpx.adobe.com/adobe-connect/kb/connection-test-connect-meeting.html

Note : The capacity of the webinar system is limited to
50 attendees. Please enter the webinar room early to ensure your space.



About RareConnect :
A partnership project of EURORDIS and NORD, RareConnect provides a platform for rare disease patient organisations to develop online communities across continents and languages. RareConnect provides a place where patients and families, researchers, physicians, and representatives from patient organisations, can connect in a neutral, non-commercial space.  Translation of stories, blog, and forum posts are completed by human translators.  Patients can therefore have conversations with others in languages they do not even speak themselves. See a video of living with TMAU, subtitled into 5 languages here.

The TMAU Community was launched in partnership with MEBO Research in May 2012. Please register and share your experience there today.
Rare Connect adobe connect room for TMAU/FMO3 webinars

6 comments:

Anonymous said...

Where can we submit questions in advance ?

Aug 10, 2012, 12:37:00 PM
MeBO Research Staff1 said...

Hi. We will make a thread in the rareconnect TMAU forum where people can post questions. At the moment the post function is not working. Of course due to time limits etc we may not be able to go through some/all pre-questions

Aug 11, 2012, 9:21:00 AM
MeBO Research Staff1 said...
This comment has been removed by the author.
Aug 13, 2012, 11:30:00 AM
MeBO Research Staff1 said...
This comment has been removed by the author.
Aug 13, 2012, 11:31:00 AM
MeBO Research Staff1 said...
This comment has been removed by the author.
Aug 13, 2012, 11:33:00 AM
MeBO Research Staff1 said...

you can post questions here :
rare connect TMAU thread for 19 AUG webinar

Aug 13, 2012, 11:34:00 AM
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