Pompe Disease News

Pompe Disease News Your source for pompe disease news, support, & real stories from the community. Let’s raise pompe awareness together!🎗️

How rare is Pompe disease, really? https://bit.ly/46mCdkZFor a long time, it was believed to affect only a very small nu...
12/20/2025

How rare is Pompe disease, really? https://bit.ly/46mCdkZ

For a long time, it was believed to affect only a very small number of people. But new research shows it may be more common than we once thought.

✨ A hopeful turn for a child with infantile-onset Pompe disease: https://bit.ly/44Rs1RyAfter a switch to Nexviazyme, his...
12/19/2025

✨ A hopeful turn for a child with infantile-onset Pompe disease: https://bit.ly/44Rs1Ry

After a switch to Nexviazyme, his decline reversed and his health improved.

For patients whose original enzyme therapy stops working, this case offers encouraging evidence that Nexviazyme may restore stability and improve long-term outcomes. 💙

💡 Want to know what treatments are available for Pompe disease? Find out here: https://bit.ly/4lTOe7zThis article breaks...
12/18/2025

💡 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?

Alpha-glucosidase activity levels may help identify when gene therapy effects can be measured in people with infantile P...
12/18/2025

Alpha-glucosidase activity levels may help identify when gene therapy effects can be measured in people with infantile Pompe disease on ERT. https://buff.ly/GVZQGx3

Planning for a family when you or your partner is a carrier of Pompe disease involves some important steps and choices. ...
12/16/2025

Planning for a family when you or your partner is a carrier of Pompe disease involves some important steps and choices. 💙 https://bit.ly/4pUDsjE

If you’re thinking about having children and Pompe disease is part of your family story, this info can help you explore your options with confidence.

Regular exercise and therapy can make a real difference for people living with Pompe. https://bit.ly/3JWoSZbIt helps wit...
12/13/2025

Regular exercise and therapy can make a real difference for people living with Pompe. https://bit.ly/3JWoSZb

It helps with muscle strength, joint flexibility, heart/lung health, and mental wellness. This article explains safe exercises, those to avoid, and tips to stay active without overdoing it.

Ever wondered how treatment for Pompe disease actually works? https://bit.ly/3YbV2ngKnowledge brings hope—and sharing th...
12/12/2025

Ever wondered how treatment for Pompe disease actually works? https://bit.ly/3YbV2ng

Knowledge brings hope—and sharing this could help others understand what living with Pompe really means. 💙

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