Cure HSPB8

Cure HSPB8 is the only charitable project and advocacy group dedicated to overcoming the challenges posed by HSPB8 Myopathy. The organization’s goal is to find a treatment and a cure for this ultra-rare, debilitating condition, expand knowledge of the disease, determine the true number of patients, and support the community. Cure HSPB8 has brought together a multidisciplinary team of patients and families, advocates, researchers, and healthcare professionals to achieve these ambitious goals.  

A recently launched global patient registry gathers comprehensive data on disease progression, which is crucial for the development of treatments. The next key step forward is a drug repurposing screen in a disease-relevant model and reaching more patients worldwide.  

Cure HSPB8 is driven by the vision of a future where HSPB8 Myopathy is conquered, treatments are accessible, and the community stands united. No one walks alone. 

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2023 Annual Report

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