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For Patients and Families

Whether you are newly diagnosed or your family has suffered from VCP disease for a long time, we are here for you. We have resources to help you and your family navigate this diagnosis and a community that is taking action to fight for cure.

Take Control

If you or a loved one has been diagnosed with a mutation in the VCP gene, we are here to help. We have resources and a community to help you navigate your heathcare journey.

Get Involved

Our organization is powered by volunteers willing to give back, participate in research, and share their story to help others. Join us in  fighting for a cure.

Take Control of Your Health

If you are newly diagnosed or are ready to take control of your health, this section is for you. Even though there is no cure yet, there are things you can do right now. You do not have to face this journey alone. A VCP doctor can help you manage your symptoms, and our community of patients can offer peer-to-peer support. Start with these four steps to being in control of your health care journey.

1. Understand Your Genetic Diagnosis

Genetic testing is the only conclusive way to establish an accurate diagnosis of VCP disease. To help you answer some of the questions about genetic testing, we have created a VCP family guide.

2. Monitor your health with a team of doctors.

A VCP patient may experience many different symptoms throughout the course of the disease. You will need a team of doctors who are willing to learn about VCP disease. Take these care guidelines with you to your next doctor's appointment to help them care for you.

3. Find a VCP


We have compiled a map of physicians and therapists familiar with VCP disease. This map was created to help patients find specialists in their region and beyond. It is a constant work in progress updated through references from patients.

4. Find a Support


Get plugged in to our VCP community. We regularly host patient and family events and online support groups. There are many ways to connect: private facebook group, monthly virtual happy hours, and educational webinars

Resources Toolbox

Get more information from our resources toolbox, including an "About VCP" one-pager, exercise guides, informational websites, and much more.

VCP Informational One-Sheet

Virtual Patient and Family Events

Get Involved

Ready to get involved and make a difference? Your participation, unique perspectives, and talents are essential to finding a cure for VCP disease. There is power in our community. 

Participate in Research

Enroll today in our patient-powered research projects. Your participation will make a positive impact and progress for a cure.

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Connect with us to learn more about these opportunities and how you can get to get involved.

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