Cure VCP Disease, Inc., is dedicated to driving the development of a cure for diseases caused by the valosin containing protein (VCP) gene, including muscle disease, bone disease, and the neurodegenerative diseases ALS, FTD, Parkinson’s, and CMT.
We collaborate on research and advocacy initiatives that help patients and their families. We encourage patients and doctors to connect with us.
Your support enables us to look beyond our challenges and focus on our fight to find a cure.
What is VCP disease?
It's also called VCP-associated multisystem proteinopathy
or inclusion body myopathy associated with Paget's disease of bone and frontotemporal dementia.
IT'S RARE.
Less than two thousand people in the world are currently diagnosed with VCP disease, but experts agree that many patients are undiagnosed.
IT'S GENETIC.
VCP disease is hereditary - a parent with the VCP gene mutation has a 50% chance of passing it to their child.
IT'S DEBILITATING AND PROGRESSIVE.
It can affect a person’s muscles, bones, brain and nerves. Most patients lose the ability to walk and care for themselves, half develop a painful bone disease, and one third develop a form of dementia that changes their behavior and ability to communicate. Symptoms vary but typically first develop in mid-adulthood. It has recently been discovered, however, that children can be affected in rare cases.
THERE IS NO CURE.
There is no cure or disease-altering treatments for VCP disease, but we are funding research and creating a pathway for future treatments. And, we are helping patients learn about ways to improve their current quality of life through therapy and coordinated disease management.
Cure VCP Disease is honored to be a part of the CZI Rare As One Initiative.
Patient-Powered Research
Enroll today in our patient-powered research projects. Your voice and participation can make a positive impact and advance the progress for a cure.
Care Guidelines
Since many doctors and nurses may only see one or two VCP patients in their lifetime, getting proper care is hard and complex when you have VCP disease.
Fortunately, a team of international doctors has established clinical care guidelines to help doctors quickly understand the symptoms, testing, and therapies to consider for you.
Request these free business cards to share information with your healthcare providers.
Cure VCP Disease Events and Meetings
Unless indicated otherwise, all listed times are US Eastern time zone. Convert to your local time zone here.
