Patient Resources & Support

TOGETHER WE CAN MAKE A DIFFERENCE

Support Groups

​Please reach out to us if you are affected by this disease in any way.  No one should have to cope with this disease alone.  We regularly host patient and caregiver calls as well as host support groups online.

1.  Join the VCP Disease group on Rare Connect  www.rareconnect.org

2.  For patients and caregivers, there is a closed facebook group.  This group is set-up to share dietary suggestions, mobility aids, as well as stress relief.  

 

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

Equipment Resources

These slides were presented at the 2019 Cure VCP Disease Patient & Caregiver Conference and details accessibility equipment that our patients reported as useful.

Medical Paper for Clinicians about IBMPFD

This medical paper outlines a treatment and evaluation protocol for patients with IBMPDF written by Dr. Virginia Kimonis.

Genetics Home Reference

This links to the IBMPFD site on Genetics Home Reference.  The website provides information for the general public about the effects of genetic variation on human health. Genetics Home Reference is a consumer health website from the National Library of Medicine, which is part of the National Institutes of Health, an agency of the U.S. Department of Health and Human Services.

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Other Websites

The website ibmpfd.info was created by patient David Sweetman and chronicles his journey, learnings, and recommendations with VCP disease.

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Organizations

Paget's disease of the bone affects over half of VCP patients. The good news is that there are treatments available if it is detected early enough.

The Paget’s Association has made a series of short videos focusing on The Treatment Story, for example, Dr Anna Daroszewska describes how bisphosphonates work, and patients, Linda and Keith, discuss their experiences. Learn more https://paget.org.uk/full-treatment-stories

Biobanks

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The Brain Donor Project

 

You might be surprised at how many people don’t know that becoming a brain donor & the process of brain donation for research is a thing—a critically needed thing.  It could help advance the science into our disease, IBMPFD / VCP Disease.

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Coriell Institute For Medical Research

Biosamples are available at the Corielle Institute for research purposes.  LCL, Fibroblast, and DNA samples are available for IBMPFD / VCP Disease.