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 Recommendations
These slides were presented at the 2019 Cure VCP Disease Patient & Caregiver Conference
Exercise Recommendations
These presentations have been compiled from different conferences and conversations.
Genetics Home Reference
GENETICS HOME REFERENCE links to the IBMPFD site on Genetics Home Reference which is a great resource for IMBPFD patients.
Library of Medical Papers
MEDICAL PUBLICATIONS links to a database of all published medical publications related to IBMPFD from the US National Library of Medicine on pub med.gov.
Gene Reviews
GENE REVIEWS is an excellent resource for detailed scientific information on the VCP gene mutation as it relates to IBMPFD.
Medical Resources
by Virginia Kimonis, MD, Sandra Donkervoort, MS, CGC, and Giles Watts, PhD.
A comprehensive report that you can take to your doctors
OMIM® - Online Mendelian Inheritance in Man
This links to the IBMPFD entry in OMIM, a comprehensive, authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily
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.
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.
The Weizmann Institute of Science has established a database which aims at providing a quick overview of the current available biomedical information. Attached is the link to the associated gene cards for the VCP gene.
The Weizmann Institute of Science has established a database which aims at providing a quick overview of the current available biomedical information. Attached is the link to the associated gene cards for IBMPFD.