Duke Pompe Disease Clinical and Research Program

07/07/2026

You are invited to join us for an Early Bird session on Saturday July 10 at 7:30am at the Durham Hilton Trinity Room C before the meeting officially starts.

In this session, we will wake up our body and mind through gentle movement and breath. It will get slow, then it will get fast, and it might even get silly! In the end, we hope to feel connected to your body and present in the moment- ready for a full day of activity! Come as you are (no special dress code required).

07/07/2026

On July 10th Grant’s Giants Pompe Awareness Nonprofit and Marshall’s Mountain will be hosting a Friday Night Social for all the families coming for the Pediatric Pompe Conference! There will be a DJ, Photo Booth, Face painting / Balloons, and a Magic Show at 7pm. Please register using the QR code or with this link: https://forms.gle/UxuUYec8CzpoJQSt9

06/30/2026

We are pleased to announce the agenda for the upcoming Pediatric Pompe Patient Conference on Saturday July 11th!

If you aren't able to join us in North Carolina, you can still attend virtually. Just make sure to register here (https://dukepedspompeconference2026.vfairs.com/en/registration-form).

For the virtual portion, the lunch will not be broadcast and the breakout session will only be "Growth, Function, and Nutritional Supplements in Pompe Disease" talk.

06/09/2026

05/19/2026

The Duke team and Pompe Alliance are excited to announce that registration for the 2026 Hybrid Pediatric Pompe Conference on Saturday, July 11th, is NOW OPEN! This event will be both in-person at the Hilton Durham near Duke University and streamed online.

Registration Link: https://dukepedspompeconference2026.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: [email protected]. We'd love to incorporate it into the conference! Please send your photos by July 3rd.

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

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 at [email protected] and a member of our team will respond to you as soon as possible.

Thank you!
-Jessica

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.

04/23/2026

The recordings of the Adult Pompe Conference on March 28th are now available on the website!

To access please log in here: https://dukeadultpompeconference26.vfairs.com/
Then click "Auditorium", then "Click here to join sessions" and scroll down to the talk you would like to see.

The videos will be available until May 22nd!

-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.

04/15/2026

Happy International Pompe Day from the Duke Pompe Conference Planning Committee! 💚🩵

04/09/2026

https://medschool.duke.edu/news/new-biomarker-could-guide-future-brain-targeted-therapies-pompe-disease?fbclid=IwY2xjawRD83lleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA80MDk5NjI2MjMwODU2MDkAAR7zC8v3jjXEBH3FG2_xvmCXdRAIISWPkNPqxqZgqgf40ByeD6_0bWdz_mMxNw_aem_HMvsF3Tj271Y2BxCCkYqug

New research from Duke University School of Medicine is helping scientists better understand how Pompe disease affects the brain as patients age.

Led by Priya Kishnani, MD, the study examined a potential biomarker called glial fibrillary acidic protein (GFAP) that may allow clinicians to more accurately detect and monitor central nervous system involvement. The findings, published in eBioMedicine, could also support the development of future brain‑targeted therapies.

🔗 Learn more about the research and why it matters for patients and families at the link in our comments.

03/27/2026

TOMORROW we are hosting the Adult Pompe Conference
Please join us here at 9am EST on Saturday:

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.