HSPB8 Myopathy, also known as Myofibrillar Myopathy Type 13 with Rimmed Vacuoles (MFM13, OMIM: #621078) is an ultrarare, autosomal dominant muscle-wasting disease that typically begins in early adulthood. Despite its severity, it often goes unnoticed due to its rarity. Cure HSPB8 is a patient organisation dedicated to supporting those affected by this challenging condition.
Their mission is to improve the lives of patients and families through advocacy, resources, and community support. As a growing patient organisation, increasing awareness is crucial to helping those impacted by HSPB8 Myopathy connect with the resources they need.
If you’re interested in learning more or collaborating with them, please go to their website: curehspb8.org
Together, we can amplify the voices of those living with HSPB8 Myopathy and help bring vital support to those who need it most.
