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2023 Duke/UPF
Adult Pompe Patient Meeting

April 22, 2023 | Time: 8am-5pm, EDT

About the Event

The Duke Pompe Disease Clinical and Research Team and the United Pompe Foundation are pleased to welcome you to the annual Adult Pompe Disease Patient Meeting. This meeting 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 both in person and virtually. Welcome and we look forward to seeing you in April 2023!

Participating Companies

Gold

Silver

Bronze

Standard

Agenda

Friday, April 21, 2023

In-Person Only (No Live/Recorded Sessions)

Saturday, April 22, 2023

April 22, 2023 08:00

Welcome Message and Breakfast

Keynote Presentation

8:30 - 9:30 am

 Priya Kishnani

 

Rapid Talks

9:30 - 10:15 am

Immune Phenotyping in Pompe Disease

 Ankit Desai, MBBS

A Framework for Classifying GAA Variants: The Pathogenic, the Benign, and the Uncertain

 Catherine Rehder, PhD

Switching from Lumizyme to Nexviazyme

 Christopher Carter

April 22, 2023 10:30

Updates in Gene Therapy in Pompe Disease

 Dwight Koeberl, MD, PhD

Pulmnary Topics in Pompe Disease

11:15 - 12:00 pm

 Wissam Mansour, MD

 

April 22, 2023 13:00

Speech/Swallow Topics in Pompe Disease

 Harrison Jones, PhD

Understanding Clinical Trials and Research - (Livestreamed only, rest of the break out sessions will be available during the on-demand period.)

11:15 - 12:00 pm

 Grace Stafford

 

 Leticia Flores

 

April 22, 2023 15:00

Rapid Talks

In Utero ERT for Infantile Pompe Disase

 Jennifer Cohen, MD

Updates in Newborn Screening for LOPD

 Neelam Makhijani, MBBS,MD

 

Physical Therapy in LOPD

3:45 - 4:45 pm

 Jean Bridges, PT

 Allison Bartkowiak, PT

 

Closing Remarks

4:45 - 5:00 pm

 Priya Kishnani

Topics in Aging and End-of-Life Care - Part 1

Topics in Aging and End-of-Life Care - Part 2

Frequently Asked Questions

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.
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.
Yes, we recommend registering on the virtual platform so you can have access later.
Yes, there will be on-site registration for those who did not pre-register for in person.
No, there is no virtual option and there will be no recording for Friday night.
There are no talks related to Pompe disease on Friday night.
Only the session in the main conference hall will be streamed to the platform. We will record the other breakout sessions and will do our best to make them accessible at a later date.
If you are attending live, please put your questions in the Zoom chat. If you are watching the recorded sessions and have a question, please email it to dukepompemeeting@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 meeting has passed.
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.
No, to avoid disruptions, participants will not be able to turn on their audio/video. 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.
Dr. Kishnani’s clinics are fully booked for the week of the meeting. If you would like to be seen at a later time, please contact 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 dukepompemeeting@duke.edu with your question if it is not answered above.