Pompe Disease News

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

💭 What is it like living with Pompe disease? https://bit.ly/3Tqn6B4From muscle weakness to breathing issues, the symptom...
01/17/2026

💭 What is it like living with Pompe disease? https://bit.ly/3Tqn6B4

From muscle weakness to breathing issues, the symptoms of Pompe disease can vary a lot—and often go unnoticed for too long. 💨💪 Knowing what to look for is the first step toward getting answers and support.

💙 We break down the signs clearly, so whether you're newly diagnosed, a caregiver, or just learning—you’re not alone, and you deserve to feel informed.

Tap the link in bio to read the full article and learn how to recognize the symptoms of Pompe. 🧠👇
Knowledge is power—and we’re here to walk with you.

New year, new look! https://bit.ly/3Loh6ZhAs our rare disease community grows, we're changing our logos to reflect how i...
01/16/2026

New year, new look! https://bit.ly/3Loh6Zh

As our rare disease community grows, we're changing our logos to reflect how interconnected we all are. Our parent site, BioNews, represents over 50 rare diseases, and we're all in this together.

When it comes to research, advocacy, and cures, when one community wins, we all win.

Thank you all for your continued support!

Sometimes the bravest move is letting others in. https://bit.ly/4mVikrSKeara learned that asking for help doesn’t mean y...
01/15/2026

Sometimes the bravest move is letting others in. https://bit.ly/4mVikrS

Keara learned that asking for help doesn’t mean you’re weak—it means you care for everyone involved, including yourself. 🩵

The FDA cleared AskBio’s AB-1009 gene therapy to move into a Phase 1/2 clinical trial for late-onset Pompe disease (LOPD...
01/15/2026

The FDA cleared AskBio’s AB-1009 gene therapy to move into a Phase 1/2 clinical trial for late-onset Pompe disease (LOPD). https://buff.ly/ivLMBia

“Being diagnosed with a rare disease involves so many uncertainties and unknowns… all I could do was take it one day at ...
01/14/2026

“Being diagnosed with a rare disease involves so many uncertainties and unknowns… all I could do was take it one day at a time.” 💬 https://bit.ly/4pFEQGm

In a personal column, Dwayne shares what life has been like five years after receiving his Pompe disease diagnosis—from starting enzyme replacement therapy and physical therapy, to finding strength in the people he’s met and lessons learned along the way. His story is a reminder that while the future may be unpredictable, community and resilience can make the journey meaningful.

Pompe disease isn’t the same for everyone—and how it changes over time matters. https://bit.ly/46YBd8Q 🧠💪 From type and ...
01/12/2026

Pompe disease isn’t the same for everyone—and how it changes over time matters. https://bit.ly/46YBd8Q

🧠💪 From type and symptoms to evolving treatments and everyday life, this article breaks it down simply and clearly.

🤔 Ever wonder how small changes can make everyday tasks easier with Pompe disease? https://bit.ly/41nVNM4Occupational th...
01/10/2026

🤔 Ever wonder how small changes can make everyday tasks easier with Pompe disease? https://bit.ly/41nVNM4

Occupational therapy isn’t about doing everything on your own—it’s about discovering smarter ways to live. With tools, breathing strategies, and posture adjustments, OT helps you conserve energy, reduce discomfort, and stay independent in the tasks that matter most.

01/09/2026

This year’s most-read articles brought updates on scientific advances, treatment improvements, and meaningful clinical insights for people affected by Pompe disease. https://bit.ly/4jszFbk

From new enzyme replacement therapies that reach the brain and muscles to unique diagnostic case studies and innovative genetic approaches, these are the stories that defined 2025. 💙

Watch our recap of the top headlines, and join us in looking forward to even more progress in 2026!

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