‹ ›

 

2022 Duke and UPF
Adult Pompe Patient Meeting

Friday, April 1 (6pm-9pm) and Saturday, April 2(8:30am-4:30pm) EST

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. Welcome and we look forward to “seeing” you on April 2, 2022!

Participating Companies

Silver

Bronze

Standard

Agenda


Friday, APRIL 1, 2022

6:00pm-6:30pm

Welcome Message

 6:30pm-7:30pm

Patient Perspectives/Caregiver Panel

 7:30pm-9:00pm

Hobby Breakout Rooms/Social Hour

Saturday, April 2, 2022

8:30am-9:00am

Opening Remarks

Priya S. Kishnani
MD

David Hamlin
UPF
 9:00am-10:00am

Pompe Disease: Overview and Recent Updates

Priya S. Kishnani
MD

 10:00am-11:00am

Gene Therapy for Pompe Disease: A Primer

Dwight Koeberl
MD, PhD

 11:00am-11:15am

Break

 11:15am-12:00pm

Physical Therapy Outcome Measures: Monitoring People with LOPD

Tracy Boggs,
PT

 12:00pm-1:00pm

Lunch

 1:00pm-1:45pm

The Role of Speech Pathology in the Management of LOPD

Harrison Jones,
PhD

 1:45pm-2:30pm

Breakout Sessions (Choose 1)

First Time Attendee Information Session


Erin Huggins


Muscle Pathology in Pompe Disease


Nina Raben,
PhD

 2:30pm-2:45pm

Break

 2:45pm-3:30pm

An Overview of CareConnectPSS

Amy Destefanis
LCSW, CCM

Katharine Stoate,
MS, CGC

 3:30pm-4:15pm

Sleep/Pulmonary Issues in Pompe Disease

Ken Berger,
MD

 4:15pm-4:30pm

Closing Remarks and Group Photo

Frequently Asked Questions

Enter the meeting website and provide the email address you used to register. You will be taken to the meeting homepage. Click on the “Auditorium” and you will see a white screen with the Duke/UPF logos. Click anywhere on this screen. You will be taken to a list of the sessions, and can enter the session that is currently in progress at that time.
Yes, all registered attendees will have access to view recordings of the presentations on-demand for 30 days after the meeting. Please note that recordings will only be available to those who have registered for the meeting. After 30 days, your access to the recordings will expire.
If you have questions about registration, please email dukepompemeeting@duke.edu.
On the main conference page, you will see the “Help Desk.” Please utilize this feature to connect with a vFairs representative to troubleshoot.
Please choose one breakout session to attend – there will be two breakout sessions occurring at the same time. You will be able to switch between sessions if you desire. If you want to view more than one session, you may watch the recorded versions of the additional sessions after the meeting.
Each session will include a live Q&A, if time allows. You will be able to submit your questions via the Q&A box, which will be moderated during the session. If a speaker does not have time to answer your question, please email your question to dukepompemeeting@duke.edu and someone from our team will follow up with you after the conference.
Attendees can have their sound and video on for the Friday night social event. On Saturday, sound and video will be disabled for all attendees, as to minimize disruptions during the presentations. There will be another opportunity to have sound and video on during the “Closing Remarks” session to say hello to anyone you may have missed on Friday!
Individual registration is encouraged, if possible. This will allow you to attend different breakout sessions than your family member(s) if you wish. However, you may register all together if you prefer or have only one device.
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.
You will be sent a survey to the email address you used to register for the event. We encourage all attendees to fill out this survey, as this information helps us plan future meetings.
Please email dukepompemeeting@duke.edu with any additional questions.