Duke Pompe Disease Clinical and Research Program

03/17/2026

Here is the agenda for the Adult Pompe Conference for Saturday March 28th!

Register here: https://dukeadultpompeconference26.vfairs.com/en/registration-form

We can't wait to see you all!
-Grace

03/09/2026

It's time to send in your photos to be featured in the patient slideshow during the Adult Pompe Conference! We'd love to see any photos of you during your infusions, on vacation, or visits to Duke!

Please send in the photos to dukepompe@duke.edu by March 20th!

03/04/2026

For the Pediatric Pompe Conference on July 11th we will have the following days available for clinical appointments: Thursday July 9th, Friday 10th, and Monday 13th.

There are a limited number of appointment slots available which will be filled in the order requests are received. Please contact Sandra Durden at 919-684-0307 if you are interested in scheduling an appointment.

02/27/2026

Happy (early) Rare Disease Day from Pediatrics Medical Genetics!

We wore our stripes and rare disease shirts to celebrate earlier this month. We hope all of you are celebrating Rare Disease Day tomorrow wherever you are!

As a reminder we have the upcoming Adult Pompe Conference on Saturday March 28th!
Register here: https://dukeadultpompeconference26.vfairs.com/en/registration-form

02/10/2026

The Duke team is excited to announce that registration for the 2026 Virtual Adult Pompe Conference on Saturday, March 28th, is NOW OPEN!

Registration Link: https://dukeadultpompeconference26.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.

Please send us photos you'd like included in patient slides here: dukepompe@duke.edu. We'd love to incorporate it into the conference! Please send your photos by March 20th.

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

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!
-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.

01/05/2026

The wonderful Haley was featured in a news article about new research from our group about the IOPD patients who are now living into adulthood!

New research from Duke University shows patients diagnosed with infantile-onset Pompe disease are surviving into their 20s thanks to early treatment.

12/29/2025

12/18/2025

Happy Holidays from the Duke Pompe Clinical Research team!

12/17/2025

🎄❤️ This Christmas card isn’t just a holiday greeting, it holds so much meaning for our Macie’s Mission family! 🎄❤️

Luke was invited to design the Duke Pompe Disease Clinical and Research Program team’s holiday card, and he poured his heart into every detail. His message of “Peace, Joy, and Love to you and yours” is more than just festive words … it reflects the compassion, hope, and joy Duke and Macie’s Mission brings to the Pompe community.

Inspired by his sister Macie and his love for art, Luke’s creativity is helping spread awareness and holiday cheer! We are so proud of this thoughtful, talented, and big-hearted young man! We are beyond honored that his artwork, representing Macie’s Mission, gets to share a message of hope this season. ✨🎨

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