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For Patients and Families

TAKE CONTROL OF YOUR HEALTH

If you or a loved one has been diagnosed with a mutation in the Valosin-Containing Protein gene, we are here to help. Founded by a group of families affected by this rare disease, Cure VCP Diseases understands and wants to help you as you navigate this journey. Please know that we are here to work towards a better future for you and your family. In addition to supporting research, there are things that you can do right now.

 

Consider joining us in the fight for a cure.

1. Monitor your Health with a Team of Doctors

There is no cure yet, but doctors can help you with symptom management, disability qualifications, device recommendations, prescriptions, and healthcare maintenance. Led by Cure VCP Disease and a team of international experts, these guidelines are designed specifically for VCP patients for all the different symptoms a VCP patient may experience. Your care is important, and it is vital for you to form a care team. Take these guidelines to your next doctor's appointment. 

 https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02172-5

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2. Find a VCP Doctor

As a resource for our patients, we have compiled a list and 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 participation with our organization and references from patients.

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3. Find a Support Group

No one should have to cope with this disease alone. Get plugged in to our VCP community. We regularly host patient and family events and online support groups. Get plugged in:

1.  Join the VCP Disease group on our monthly happy hours and educational webinars.

 

2. Get the invitations to our events and notified of new research on our monthly newsletters Cure VCP Disease Newsletter Subscription (mailchi.mp)

3.  For patients and caregivers, there is a closed facebook group.  This group is set-up to for families to share anything . . . dietary suggestions, mobility aids, as well as stress relief. It is private and membership is monitored @Ibmpfd - Patients, Family, and Friends

 

4.  For caregivers, the myositis association has invited caregivers to join their caregivers only facebook page.

5. Use our socials on Facebook, Twitter, and Linkedin: @curevcpdisease #vcpdisease

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4. Genetic Diagnosis

Genetic testing is the only conclusive way to establish an accurate diagnosis of VCP disease (medically known as Multisystem Proteinopathy). Receiving a genetic diagnosis has many advantages, but pursuing genetic testing can be stressful. The right time for genetic testing is a personal choice as psychological, financial, and social factors must be considered. Family consultation with a genetic counselor before and after genetic testing is recommended. 

5. Resources Toolbox

Find more information on our resources toolbox such as exercise guides, informational websites, and more

6. 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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