MUSC Patient and Family Virtual Conference on September 9th

Posted by becleartoday @becleartoday, Sep 2 6:25am

Before you get totally into holiday weekend mode, let me alert you to a patient conference. The conference called “2022 Update on NTM Infections Patient and Family Session” will be sponsored by the Medical University of South Carolina (MUSC) on Friday, September 9th. It will be both an in-person and virtual conference and they have extended the sign-up period to next Wednesday the 7th. Best of all, it will be led by the highly regarded Dr Patrick Flume and it is FREE!!!

Dr Flume is an expert in Cystic Fibrosis, Bronchiectasis and NTM Lung Disease. He is frequently cited for suggesting that bronchiectasis is not just a cycle of airway dysfunction, inflammation, infection and structural damage, but rather a vortex. His model acknowledges the interconnectedness of all the characteristics of BE and the complexity of the disease.

The MUSC NTM team will discuss different aspects of care ranging from diagnostic testing, treatment and monitoring, and review opportunities for advocacy and clinical research. The MUSC NTM team consists of pulmonary and infectious disease clinicians, nursing, respiratory therapy, pharmacy and psychology who work together to address the needs of those affected by NTM infections. (paraphased from the MUSC website)

To sign up, go to https://bit.ly/3Q5oBk9 and select the “online registration portal” on the left. You will have to register as a medical professional so select “Other” and “Patient Advocacy” as your specialty. (I confirmed this with the office overseeing registration)

This event is not expected to be recorded.

Thank you To bronchi-sister L from South Carolina for letting us know about this fantastic learning opportunity!

Enjoy the Labor Day weekend and reward yourself for all the hard work you put into managing your disease.

Best,

Linda Esposito, MPH

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Hi Linda, Thanks for the heads up on the conference. Another one of your thoughtful ,helpful suggestions—Registered today. Robert

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Please note that these instructions are for your computer. If you register on a tablet or phone, the left menu will not be available. But, stay with it and you will figure it out!

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Hello, I registered but not sure if accepted as I did not receive a confirmation email. Do you know if they send a email the day of the conference?

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@helenrivera

Hello, I registered but not sure if accepted as I did not receive a confirmation email. Do you know if they send a email the day of the conference?

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I received a confirmation email but it did not contain a link to join the conference. That may not be set up yet and hopefully comes later next week.

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@bobnoodle

Hi Linda, Thanks for the heads up on the conference. Another one of your thoughtful ,helpful suggestions—Registered today. Robert

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My pleasure💕

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I almost signed up but Bronchiectasis was no subject matter so did not think beneficial to our particular circumstances but am very appreciative of notification and hope you will keep us advised of future opportunities.

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@totty

I almost signed up but Bronchiectasis was no subject matter so did not think beneficial to our particular circumstances but am very appreciative of notification and hope you will keep us advised of future opportunities.

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NTM (Non-tubercular mycobacteria) includes MAC – so maybe it would be helpful after all? I will listen in just to hear the latest info.
Sue

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@helenrivera

Hello, I registered but not sure if accepted as I did not receive a confirmation email. Do you know if they send a email the day of the conference?

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I registered yesterday and I did not receive a confirmation email either. I don’t want to miss this presentation.

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I signed up for the MUSC Conference last week on my computer. I followed all of the instructions, but I haven’t received a link yet in order to join in.

I am newly diagnosed and truly need this information. Please let me know if I can still join.
Thanks!

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@cappidog16

I signed up for the MUSC Conference last week on my computer. I followed all of the instructions, but I haven’t received a link yet in order to join in.

I am newly diagnosed and truly need this information. Please let me know if I can still join.
Thanks!

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@cappidog16 & @kwi – Here is the link, which you can try. It will ask for first & last name & email, so if you are registered you should be able to get in.
EVERYONE Please Note – The is Eastern Time, so the hours will be 1pm in the Midwest, Noon Mountain Time, and 11am Pacific.

NTM – Patient and Family – SEPT 9TH, 2PM to 5PM https://video.ibm.com/channel/c8gMqaWGwyZ
Sue

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@sueinmn

@cappidog16 & @kwi – Here is the link, which you can try. It will ask for first & last name & email, so if you are registered you should be able to get in.
EVERYONE Please Note – The is Eastern Time, so the hours will be 1pm in the Midwest, Noon Mountain Time, and 11am Pacific.

NTM – Patient and Family – SEPT 9TH, 2PM to 5PM https://video.ibm.com/channel/c8gMqaWGwyZ
Sue

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Thanks so much! It looks like I am registered because I tapped on the link and it says it’s off the air. Looks like I will be able to get the conference at 2 pm.
I appreciate your help so much.

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@sueinmn

@cappidog16 & @kwi – Here is the link, which you can try. It will ask for first & last name & email, so if you are registered you should be able to get in.
EVERYONE Please Note – The is Eastern Time, so the hours will be 1pm in the Midwest, Noon Mountain Time, and 11am Pacific.

NTM – Patient and Family – SEPT 9TH, 2PM to 5PM https://video.ibm.com/channel/c8gMqaWGwyZ
Sue

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I clicked the link earlier was able to get and its said off the air. I am now in and its 12:18 pm in my part of your world…..not sure how late I am🙁🤗

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