The condition at the centre of our work has long been referred to by several different names, including HSPB8 myopathy and distal myopathy with rimmed vacuoles. This variety of terminology has often made it challenging for patients, families, and researchers to access clear and reliable information.

In early 2025, a key update to the Online Mendelian Inheritance in Man (OMIM) database introduced an important update: the condition is now formally recognized as myofibrillar myopathy type 13 (MFM13) with rimmed vacuoles.

To reflect this clearer scientific classification, we are proud to share that Cure HSPB8 is now Cure MFM13.

While our name has changed, our commitment remains unwavering. We continue to focus on:

• Advancing and accelerating drug development
• Strengthening and empowering the global MFM13 community
• Advocating for every individual and family affected by the condition

We encourage patients, caregivers, researchers, and supporters to get involved:

• Join our global patient registry to help move research forward
• Visit www.curemfm13.org for resources and updates
• Subscribe to our newsletter and podcast to stay informed
• Follow us on LinkedIn, X, BlueSky, and Facebook for the latest news and community stories

Together, we can drive change and create a future where HSPB8 Myopathy no longer defines lives.

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