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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.

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

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.

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

Doctor

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

Group

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.

Image VCP Disease One Page Information Sheet

Virtual Patient and Family Events

Patient Happy Hours

Once a month, our community meets on Zoom for an informal time of sharing and fellowship.

Carepartner  Support Calls

Caregivers only (and significant others) get together to talk about how best to support our loved one and ourselves.

Scientific Office Hours

Want to know more about the science of VCP? Dr. Pindon hosts this informal time so that you can learn more about your disease and the direction of Cure VCP Disease.

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. 

Complete the Patient Registry

The VCP registry  is our most powerful tool in understanding how VCP disease affects patients.

 

It is a critical first building block on our path to clinical trials and improved quality of life for patients.

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It only takes 20 minutes.

COMPLETE REGISTRY

Become a VCP  Ambassador

The VCP Ambassadors are patients, friends and family members who want to volunteer and help us strengthen our community through events, outreach, and providing insights.

 

This group meets every other month and is a great way to give back. 

CONNECT

Host a Fundraiser

Fundraising events are fun and meaningful.  

 

Funds raised are critical to supporting our research and patient projects.

 

We have resource kits and materials to help you. 

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CONTACT US

Share Your Story

Your story is powerful and can help others who are also on this rare journey. Share your story with a friend, with a family member, or through social media.

 

We would love to add your story to our collection of VCP rare warriors.

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SHARE MY STORY

Participate in Research

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

Natural History Study

Natural history studies help researchers better understand VCP disease.

 

Nationwide Children's Hospital is accepting adult VCP disease patients to participate in a functional measures study.

LEARN MORE

Biorepository Roadshow

Biomarker researcher helps speed the path to treatments for rare diseases.

 

COMBINEDBrain's Biorepository project collects blood and urine samples to expedite treatment development.

LEARN MORE

Brain Donor Project

Did you know brain donation helps lead to treatments and cures?

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Understanding the process of brain donation and becoming a brain donor is critically important to advance research.

LEARN MORE
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JOIN OUR COMMUNITY

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

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