Duke Pompe Disease Clinical and Research Program

12/09/2025

The non-profit organization Macie's Mission dropped by clinic yesterday with their generous gift for our team. We'd like to thank them for their continued support of Pompe disease research!

11/18/2025

Macie's Mission, a non-profit organization for Pompe Disease awareness and fundraising, has created a podcast "The Macie's Mission Podcast" to spread awareness of Pompe Disease and to remind families that they are not alone in their rare disease journey! The episodes are available on both Spotify and Apple Music.
Give them a listen and feel free to share!

Non-Profit Podcast · Updated Daily · Listen along as we share our journey with Pompe disease and how Macie's Mission came to be. Our message is simple— spread awareness and remind families navigating life with rare diseases that they are…

11/13/2025

The Duke Team is excited to announce the Pompe Conferences for 2026! We will have more information about location and clinic dates soon.

ADULT CONFERENCE
• Date: March 28th 2026
• This conference will take place fully virtually. There is NO in-person component to this meeting.
• This meeting will be recorded and available to watch for one month after the meeting date.
• Registration is not yet open. We will post a reminder and a MyChart message when it opens.

PEDIATRIC CONFERENCE
• Date: July 11th 2026
• This event will be hybrid. There will be an in person AND virtual option.
• This meeting will be recorded to watch for one month after the meeting date.
• Registration is not yet open. We will post an update and a MyChart message when it opens.

Thank you so much and we are excited to see you all in-person or virtually in 2026!

-Grace on behalf of the Duke Pompe Conference Planning Team

09/11/2025

In case you missed our 2025 Pediatric Pompe Conference, the recordings of the meeting are now on our website (https://dukepedspompeconference25.vfairs.com/).

To view please register or log in using the email you used to register. Then click "Auditorium" and scroll through the schedule to find the recording you want to watch.

The videos will be available for viewing up to 30 days from today.

If you have any questions please email dukepompe@duke.edu

-Grace

08/25/2025

Thank you for attending the Duke Pediatric Pompe Conference on Saturday Aug 23rd! We appreciated being able to see everyone virtually and hoped you learned a lot.

Please leave your feedback here: https://tinyurl.com/DukePompeFeedback
We welcome any and all comments about the meeting and use it to improve future conferences!

We are currently working on uploading the recordings to the conference website and will update everyone when they are posted!

Thanks again!
Grace

Select a Speaker to review or Select General to review the meeting, and then scroll down and select "Next".

08/23/2025

Hi everyone,
The conference is live right now until 4pm EST!
Please log in here to watch:

Cancelling your registration will remove your access to the event. If you proceed, you will no longer be able to participate or access event-related materials.

08/14/2025

We're so excited to host the virtual Pediatric Pompe Conference in about a week on Saturday August 23rd at 9am EST.

Here is the agenda for the day filled with experts and patient advocates who will be speaking about research updates, diagnostic journeys, and much more!

Please comment below or send any questions to dukepompe@duke.edu. We'd love to incorporate questions for the Q&A sessions.

08/05/2025

We have some reminders for the upcoming Pompe Conference:

-Remember to submit photos to dukepompe@duke.edu by August 15th! We're excited to see everyone's smiling faces :)

-Please send any questions you have for our experts (Dr. Kishnani, physical therapy, nutrition, etc.) to dukepompe@duke.edu

-Please register at the link below (see comments)

07/17/2025

PHOTO REQUEST!!! We'd love to receive some photos to share during the Pediatric Pompe Conference to highlight our amazing kids and families!

Please send the photos as attachments to dukepompe@duke.edu.
Please do not leave your photos on this post and please do not send via Facebook messenger. Only photos that are emailed will be shared at the meeting.

Please submit photos by August 15th!

Thanks!
-Grace

07/03/2025

Hello Everyone!

The Duke team is excited to announce that registration for the 2025 Virtual Pediatric Pompe Conference on Saturday, August 23, is NOW OPEN!

Registration Link: https://dukepedspompeconference25.vfairs.com/en/registration-form

Please click on the link or copy and paste it into your browser to register. After you register, you should receive a confirmation email that contains important information about the event. Please read through the message in its entirety. Be sure to check your spam folder if you do not see it in your inbox. If you did not receive a confirmation email in either your inbox or your spam folder, please email us and we will do our best to make sure you are registered.

The conference agenda is still undergoing some finishing touches and will be available on the meeting website in the coming weeks.

Please note that there will be no clinics associated with this conference as it is virtual.

If you have any questions regarding the conference, please read the FAQs on the conference website. If you still have questions, feel free to email us and a member of our team will respond to you as soon as possible.

Thank you!

Cancelling your registration will remove your access to the event. If you proceed, you will no longer be able to participate or access event-related materials.

04/16/2025

Thank you all for your patience as we edited and uploaded the recordings of the presentations from the 2025 Adult Pompe Conference. The recordings are now up on the vFairs website and ready to view! You will not be able to download the recordings, but you will be able to view them on the platform for 30 days.

To access the recordings, you will go to https://dukeadultpompeconference25.vfairs.com/ and enter the email that you used to register for the conference. Click on the “AUDITORIUM” and then click the Duke Health logo. This will take you to a list of the presentations which will have links to the recordings. Click on the link to the recording you want, and you will be able to view it.

If you have any questions about this past Adult Pompe Conference or any upcoming conferences, please feel free to reach out to us at dukepompe@duke.edu!

-Grace

Cancelling your registration will remove your access to the event. If you proceed, you will no longer be able to participate or access event-related materials.