Patient Resources & Support
TOGETHER WE CAN MAKE A DIFFERENCE
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.
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.