AbouttheEvent about

The Duke Pompe Disease Clinical and Research Team and the United Pompe Foundation are pleased to welcome you to the annual Adult Pompe Conference. This Conference is designed to provide attendees with the most up-to-date and cutting-edge information about Pompe disease research and clinical care. We aim to provide an accessible and inclusive environment for individuals with Pompe disease and their families to interact with each other and with leaders in the field. This event will be held virtually. Welcome and we look forward to seeing you on March 2. 2024!

Oursponsors

Agendaof the virtual event schedule

Sessions

time iconMarch 2, 2024 09:00

Welcome Message and Words from our Sponsors

time iconMarch 2, 2024 09:30

Understanding Pompe Disease: A New Era

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Priya Kishnani
Chief of the Division of Medical Genetics, Department of Pediatrics

time iconMarch 2, 2024 11:00

Switching from Lumizyme to Nexviazyme: Real- World Outcomes

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Christopher Carter
MS4

time iconMarch 2, 2024 11:30

Break

time iconMarch 2, 2024 11:45

Physical Therapy Considerations in LOPD

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Tracy Boggs
PT, NC

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Allison Bartkowiak
PT, DPT, ATC, LAT

time iconMarch 2, 2024 12:45

Lunch

time iconMarch 2, 2024 13:45

Respiratory Diagnostic Tools in LOPD

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Wissam Mansour
MD

time iconMarch 2, 2024 14:20

Oral and pharyngeal weakness in LOPD

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Harrison N. Jones
PhD

time iconMarch 2, 2024 15:00

Updates in Gene Therapy for Pompe Disease

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Dwight D. Koeberl
MD, PhD

time iconMarch 2, 2024 15:45

Break

time iconMarch 2, 2024 16:00

Breakout Sessions (Choose 1)

time iconMarch 2, 2024 16:00

The Unmet Mental Health Needs in the Pompe Community

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JC Muyl
Pompe Alliance

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Heather Shorten
Pompe Alliance

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Nadia Bodkin
Pompe Alliance

time iconMarch 2, 2024 16:00

First Time Attendee Session

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Erin Huggins
MS, CGC

time iconMarch 2, 2024 16:00

Considerations for End of Life Care

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Eleanor Rodriguez-Rassi
MPH

time iconMarch 2, 2024 16:45

Closing Remarks and Group Photo

FAQFrequently Asked questions inquire


To access the live presentations, enter your email address that you used to register on the virtual platform. You will be taken to the meeting home page. Click “AUDITORIUM” and you will see a white screen with the Duke logo. Click anywhere on that screen. You will be taken to a list of Zoom sessions and may join the session that is currently in progress.
Once you are logged in to the platform Please click on the “HELP DESK” option and you can chat with a vFairs representative. If you are still having a problem, please email us at dukepompe@duke.edu if you have already tried the Help Desk and it did not work.
Yes. All registered attendees will have access to view recordings from the meeting for 30 days after the meeting. After 30 days, your access to the recordings will expire.
No. You will not be able to download or share the recordings. If there is someone you would like to see the recordings, such as a family member or medical provider, they must register for the conference so they can access the recordings.
No, there is no social event associated with this conference taking place on Friday.
Only the session in the main conference hall will be live-streamed to the platform and will be indicated on the agenda. We will attempt to upload recordings of the other breakout sessions, but note this may not be possible. Thus, if you are interested in the main session plus another session, we encourage you to attend the other session live and watch the recording of the main session later.
If you are attending live, please put your questions in the Zoom Q&A box. If you are watching the recorded sessions and have a question, please email it to dukepompe@duke.edu and include the name of the speaker you are asking. We will do our best to answer all questions but cannot guarantee a response after the live meeting has ended. NOTES: Please do not type your question(s) more than once in the Q&A box. It makes it very difficult for the moderators and speakers to review the question list. Try to avoid putting personal medical information in the Q&A box. The speakers are not able to give medical advice and may not acknowledge questions that are specific to one individual. General questions are encouraged.

Example of a personal medical question: “My pulmonary function tests were worse this time than before. Would you recommend I start BiPAP?” (This question is not likely to be answered as it contains a request for specific medical recommendations.)

Example of a general question: “My pulmonary function tests were worse this time than before. How do I find out if I need BiPAP?” (This question is likely to be answered as there is no direct medical advice being requested and could potentially apply to many attendees.)
Attendance is encouraged on a laptop, computer, or tablet/iPad. You may attend from your phone, but note that presentations may not be clear on a mobile device.
Individual registration is encouraged, if possible, to help us get an accurate count of attendees. However, you may use only one login if you are watching the meeting on only one device.
Audio and video will be automatically disabled for all participants to minimize disruptions during the presentations unless otherwise indicated on the agenda. If you wish to interact with other attendees during the live event, you are welcome to join the “chat room” to virtually interact with other attendees.
We will not be hosting any clinics during this year’s conference. If you would like to be seen at a later date, please call our office at 919-684-2036.
Yes, we highly encourage everyone to visit the virtual Exhibit Hall and interact with our generous sponsors!
Please email dukepompe@duke.edu with your question if it is not answered above.