CFSAC webinar 17 & 18 May 2016

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Denise

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#41
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waiting said:
I have submitted a question to the conference host about the lack of sound on the web connection -- told them there are several patients who cannot call in, but would like to be able to listen through their computers. Will let you know if my question is answered.
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Several people have messaged/emailed about the lack of audio but no response yet... (and this after sending my first question about this an hour ago)
 
Kati

Kati

Patient in training
#42
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What a nightmare, and horrible thing to do to vulnerable patient population.
:mad::oops::grumpy::bang-head:
 
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mango

mango

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I'm very disappointed. I would expect them to reply to our messages, or at least display a slide/message letting us know what's going on, to tell us if they are aware of the problem or not, and if we can expect the audio to start working later or not at all...
 
W

waiting

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#45
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I also posted a question, directed to Carol Head, about whether the "national registry" would include international patients, or be restricted to US patients -- but I also got no reply.

I wonder where these questions are going? Speculations: maybe they're not even visible to the committee or maybe no-one has been designated to monitor questions coming from online audience...?
 
S

Sasha

Fine, thank you
#47
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People are tweeting? Do we at least have a list of tweeters to follow?

Piss-up/brewery situation here. :(

Was excited about this meeting, after all the progress made in the past few months.
 
mango

mango

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#48
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Sasha said:
People are tweeting? Do we at least have a list of tweeters to follow?
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I'd love to know too. The only tweet I've seen so far about what they are talking about is the one I linked to above...

If people are tweeting, they don't seem to be using the #CFSAC hashtag :(
 
W

waiting

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#53
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mango said:
I asked two questions, if they are aware of the audio issue, and if they will publish the recording with audio after the webinar has ended.
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I also asked a 2nd question just now -- whether the CFSAC committee can see posted questions from non-committee members on the webinar & whether anyone is monitoring them.
 
W

waiting

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#55
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Nancy Lee just mentioned the tech issue & said they were assured (by Comcast??) that audio would be available online -- they are trying to find out right now why it's not working.

Correction: Verizon, NOT Comcast :rolleyes:
 
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M

medfeb

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Nielk said:
Recommending $60 million for 12 centers of excellence nationwide.
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The COEs to have both multidisciplinary research and also a clinical care component, an education and outreach role, etc. They showed a great study showing the percent of patients who are able to reach an expert - 0% in the center of the country and very very low elsewhere.

Very good presentation
 
D

Denise

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#59
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medfeb said:
The COEs to have both multidisciplinary research and also a clinical care component, an education and outreach role, etc. They showed a great study showing the percent of patients who are able to reach an expert - 0% in the center of the country and very very low elsewhere.

Very good presentation
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One of the most thorough presentations CFSAC has had in quite some time.
 
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