Pompe Disease Insights

Woman Diagnosed with Late-Onset Pompe After Decades

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Latest Research

Recent research highlights the connection between bone disease and osteoporosis in patients with late-onset Pompe disease. Maxey et al. (2025) Individuals with this condition may experience significant skeletal complications, including osteoporosis, which can further complicate their health status and quality of life.

Monitoring bone health in these patients is crucial, as they are at increased risk for fractures and other bone-related issues. This emphasizes the importance of comprehensive care strategies addressing both muscular and skeletal health. The findings underscore the need for careful management of bone health in affected individuals Maxey et al., 2025.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

Community News

Pompe AlliancePompe AllianceApr 08, 2025

Front and back of new Pompe Alliance shirts. We gave them to the attendees of our Friday night social. I hope everyone is enjoying them.

Pompe AlliancePompe AllianceApr 07, 2025

The Duke conference is over and while it was an incredibly busy weekend, I really enjoyed myself. It was nice to host Fernando from the Fundación Pompe Club Internacional. Thank you to the Duke team for all of your hard work!

Duke Clinical & Research ProgramDuke Clinical & Research ProgramApr 02, 2025

Correction: The conference starts at 8am EST

This Saturday we are hosting the Duke Adult Pompe Conference at the Hilton Durham (3800 Hillsborough Road, Durham, NC 27705) from 8am - 5pm. Our team is very excited to see everyone both in person and virtually!

Please see the agenda and register at the link below if you haven't already.

https://dukeadultpompeconference25.vfairs.com/

If you have any issues with the registration link you can reach out to us at [email protected], and a member of the conference planning team will help you.

We look forward to seeing you all this Saturday!

-Grace

Duke Clinical & Research Program Post