Our vision is life free of MFM13 and all its burden

What is Myofibrillar Myopathy type 13 with Rimmed Vacuoles (MFM13)?

MFM13 is an ultra-rare, incurable genetic disorder marked by muscle wasting and progressive weakness, typically manifesting in young adults between their 20s and 40s. This slowly progressing, autosomal dominant condition is caused by a mutation in the HSPB8 gene. HSPB8 is involved in normal skeletal muscule function and repair. Muscle weakness usually, but not always, begins distally. To date, eight publications describing around 60 patients have been published.

Cure MFM13 (previously Cure HSPB8)

We are the only charitable project dedicated to addressing the challenges of MFM13, with a vision of life free from this burden and a mission to find a cure for this debilitating condition. Our collaboration with healthcare professionals and researchers aims to unravel the complexities of MFM13. We are determined to find effective treatments and a cure, bringing hope to those affected. Equally important is our commitment to building a vibrant community for patients and families, providing a supportive space to share experiences, learn from each other, and stay informed about medical advancements.

Join us in our endeavor. Your involvement, whether as a patient living with MFM13, a family member, or a healthcare professional, is a step towards change. Together, we are stronger and can create a future where MFM13 no longer defines lives.

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