This site is intended for US audiences only.
Facing Pompe Together

Facing Pompe Disease Together

With Pompe disease, each day brings new opportunities—to learn more, support one another, and work together toward the best possible care. It’s also a chance to better understand how the condition shapes daily life. Whether you’re here for the first time or returning for deeper insights, you’re not alone. This is a place to find support and connect with the Pompe community. When you’re here, we Pompe Together.

Know more to do more card
Know more to do more card
Learning About Pompe

Know more about Pompe disease to do more

Pompe disease is a rare condition that’s caused when a gene in the body changes (or mutates), leading to symptoms that can affect muscles and breathing over time. This mutation limits people with Pompe disease from making a certain protein the body needs to break down glycogen (or energy) that gets stored in muscles. Pompe disease affects each person differently based on how much, or how little, of this protein they’re able to make.



Learn about Pompe disease symptoms, diagnosis, and treatment options to better understand what to expect.

Meet the team of experts
Meet the team of experts
Exploring Care Teams

Meet the team of Pompe disease experts

Pompe disease is best managed by a team of healthcare professionals and specialists to offer 360-degree support, from diagnosis through treatment and ongoing care.

Find out who’s on the team and get resources to meet day-to-day challenges.

Find strength in numbers
Find strength in numbers
Connecting with Others

Find strength in the Pompe community

No one should face Pompe disease alone—support and connection can make a meaningful difference.

 

Hear from people who are living with Pompe disease and discover a community that’s ready to help.