We are a patient advocacy organization driving efforts to discover a cure for neurodegenerative diseases associated with VCP including IBMPFD, dementia, Parkinson's, CMT, and ALS. We encourage patients and doctors to connect with us. We are committed to collaborating on research and advocacy initiatives and helping patients and their families.

VCP disease is a rare genetic disease, which can affect a patient's muscles, bones and brain.  It is an autosomal dominant, neuromuscular disease. This means that there is a 50% chance a VCP patient can pass the mutated gene on to a child.  Only a genetic test can confirm VCP disease.

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VCP disease is caused by a mutation in a gene called Valosin Containing Protein (VCP or p97).  VCP disease is medically known as multisystem proteinopathy (MSP1) because it is a protein disorder that affects multiple body systems. A person with a VCP disease may develop one or several of the following disorders: inclusion body myopathy, Paget's disease of bone, frontotemporal dementia, amyotrophic lateral sclerosis (ALS), Parkinsonism, hereditary spastic paraplegia, Charcot-Marie-Tooth disease, cardiomyopathy, cataracts, and neuropathy.

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There are no known cures or treatments for myopathy or dementia, but there is an approved treatment for Paget's disease of bone and there are therapies that may help delay the symptoms. It is important for a person with a VCP disease to regularly see a doctor for check-ups. See our published care guidelines here: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02172-5

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The exact number of patients currently diagnosed with this disease is unknown worldwide, but as more patients are identified and connect with us, the more we learn. The more we learn, the closer we get to treatments. Learning more about VCP disease may not only help advance the treatment of VCP disease but also other diseases.