Pompe Disease News

Pompe Disease News We are dedicated to sharing the latest news, research, and Pompe disease patient perspectives.

Adjusting your treatment plan can bring up a mix of emotions: fear, doubt, hope, and everything in between. https://bit....
08/08/2025

Adjusting your treatment plan can bring up a mix of emotions: fear, doubt, hope, and everything in between. https://bit.ly/4ozGXfF

In this powerful column, a Pompe disease patient shares what it’s like to face a dosage increase—and how they're learning to manage both the physical and emotional impact. 🩵

If you’ve ever felt uncertain about a change in your treatment, this story will remind you that you’re not alone.

Orthodontic care successfully addressed speech and swallowing problems in a 7-year-old girl with infantile-onset Pompe d...
08/07/2025

Orthodontic care successfully addressed speech and swallowing problems in a 7-year-old girl with infantile-onset Pompe disease, per a report. https://buff.ly/OZoiPa0

🩵 Big news for families affected by infantile-onset Pompe disease (IOPD). https://bit.ly/4m2eNIcEarly results from a gen...
08/05/2025

🩵 Big news for families affected by infantile-onset Pompe disease (IOPD). https://bit.ly/4m2eNIc

Early results from a gene therapy called GC301 show it may significantly improve motor function and muscle strength in children. 👶💪

This isn’t just a scientific breakthrough—it’s a step forward in helping young patients move more freely, breathe more easily, and live more fully.

🩵 Big news for families affected by infantile-onset Pompe disease (IOPD).Early results from a gene therapy called GC301 ...
08/05/2025

🩵 Big news for families affected by infantile-onset Pompe disease (IOPD).

Early results from a gene therapy called GC301 show it may significantly improve motor function and muscle strength in children. 👶💪

This isn’t just a scientific breakthrough—it’s a step forward in helping young patients move more freely, breathe more easily, and live more fully.

When we think of caregiving, we often think of people—but for those living with Pompe disease, a service dog can offer l...
08/02/2025

When we think of caregiving, we often think of people—but for those living with Pompe disease, a service dog can offer life-changing support: https://bit.ly/4nZNboH

This article explores how service dogs can make everyday life more manageable for people with Pompe disease. 💙

Long-term Myozyme helped late-onset Pompe disease patients maintain their ability to walk and breathe over 15 years, a s...
07/31/2025

Long-term Myozyme helped late-onset Pompe disease patients maintain their ability to walk and breathe over 15 years, a study in Italy finds. https://buff.ly/sjHQm98

Caring for someone with Pompe disease can be incredibly rewarding and hard at times: https://bit.ly/4kTTZkJWhether you'r...
07/31/2025

Caring for someone with Pompe disease can be incredibly rewarding and hard at times: https://bit.ly/4kTTZkJ

Whether you're helping with daily routines or navigating emotional ups and downs, your support means everything. 💬 This guide shares practical tips to make the journey a little easier—for both of you.

Understanding the root cause is the first step to better care, advocacy, and connection: https://bit.ly/4kTTZkJPompe is ...
07/29/2025

Understanding the root cause is the first step to better care, advocacy, and connection: https://bit.ly/4kTTZkJ

Pompe is a rare genetic condition caused by a missing or faulty enzyme that affects how the body breaks down glycogen.💙 Whether you're newly diagnosed or supporting someone who is, knowledge is power—and we're here to help.

🧠💬 Living with Pompe disease isn’t just physical—it affects mental health, too. https://bit.ly/3TGmV4PIn this honest and...
07/25/2025

🧠💬 Living with Pompe disease isn’t just physical—it affects mental health, too. https://bit.ly/3TGmV4P

In this honest and compassionate article, we explore the emotional side of Pompe and how to care for your mental well-being along the way. Because taking care of your mind is just as important as taking care of your body.

💬 Looking for clear, trustworthy updates on Pompe disease and related conditions like COPD? Click here: https://bit.ly/3...
07/23/2025

💬 Looking for clear, trustworthy updates on Pompe disease and related conditions like COPD? Click here: https://bit.ly/3IySnQ7

We’re here for you—with expert insights, real stories, research news, and practical tips that actually help. 💚

📬 Join our community and get the latest straight to your inbox.

💡 Want to know what treatments are available for Pompe disease? Find out here: https://bit.ly/4lTOe7zThis article breaks...
07/21/2025

💡 Want to know what treatments are available for Pompe disease? Find out here: https://bit.ly/4lTOe7z

This article breaks down the latest treatments in a simple, clear way—so you can feel informed, empowered, and supported in every step of your care journey.

👇 What’s helped you most in your Pompe journey?

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