Together, we can find a cure for HSPB8 Myopathy. Join us in the fight!

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What is HSPB8 Myopathy?

HSPB8 Myopathy is an ultrarare, 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. Muscle weakness usually begins either proximally or distally and predominantly affects the legs, gradually spreading to the trunk and arms. To date, six publications describing 26 case studies have been published

Cure HSPB8

We are the only charitable project dedicated to addressing the challenges of HSPB8 Myopathy, with a mission to find a treatment for this debilitating condition. Our collaboration with healthcare professionals and researchers aims to unravel the complexities of HSPB8 myopathy. 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 someone impacted by HSPB8 myopathy, a supporter, or a healthcare professional, is a step towards change. Together, we are stronger and can create a future where HSPB8 myopathy no longer defines lives.

Think you may be living with HSPB8 Myopathy? Join patient registry!

While HSPB8 myopathy is an extremely rare disease, we are on a mission to help identify and support those who may be affected. Click on the link below to join our patient registry and someone from our team will be in touch.