Cure VCP Disease, Inc., is a patient advocacy organization dedicated to driving the development of a cure for valosin-containing protein (VCP) associated multisystem proteinopathy (MSP), also known as IBMPFD (Inclusion Body Myopathy, Early Onset Paget’s Disease of Bone and Frontotemporal Dementia). The disease is an adult-onset, hereditary, autosomal dominant disease caused by a pathogenic variant of the VCP gene on chromosome 9.  It can affect any combination of a patients’ muscles, bones and brain and can cause degenerative diseases including ALS, frontotemporal dementia, Parkinson’s, and Charcot-Marie Tooth.

Some of our programs and activities include:

• Promote awareness of VCP disease across all stakeholders through distribution of educational materials and awareness media.
• Conduct educational webinars for scientists, clinicians and patients.
• Host patient conferences and support forums.
• Host and facilitate VCP scientific forums and convenings.
• Fund basic science, translational, and clinical research
• Foster scientific collaborations, nationally and internationally
• Host and support fundraising activities for VCP disease.
• Promote awareness through participation in events and organizations such as Rare Disease Day, MDA Conferences, Global Genes, NORD, and the FDA

Our focus: Collaborative, patient-centered programs, partnerships and research can accelerate treatments and cures that improve the quality of life for patients and their families.

1. Giving power to the patient voice.
2. Together we can make a difference.