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Patient Resources

Useful resources, websites, and more

- Patient and Family Guides -

These two guides are designed to help patients and families better navigate obtaining a genetic diagnosis and seeking a medical care team.

- Glossary of VCP Scientific Terms -

Created by Dr. Pindon, this glossary introduces all of the important terms in VCP science.

- Exercise and Equipment -

Below are resources for equipment, exercise, and physical therapy shared with our community during educational convenings.

- Useful Websites -

Our resources toolbox contains all the valuable information in one spot.

Health Information on VCP disease (formally known as IBMPFD)

Wheelchair Vans Inc is a wheelchair van company that ships free nationwide (USA) They also sell motorized chairs, scooters, lifts and other custom mobility solutions.

Partner Patient Organizations

These organizations are experts in these disease areas and provide very helpful resources for patients.

MDA

MDA supports all neuromuscular diseases, including VCP myopathy which is listed on their list of neuromuscular disease. MDA has prepared resources and materials to help educate the neuromuscular disease community about the fundamentals of neuromuscular disease.

AFTD

The Association for Frontotemporal Degeneration supports Frontotemporal Degeneration (FTD), the most common dementia for those under 60. This group provides support, research opportunity, and education for FTD. You can also learn the essential facts about FTD.

The Paget’s Association

Paget's disease of bone affects almost half of VCP patients. The Paget's association has a series of short videos and other useful resources about this bone condition. Treatments are available to treat bone pain.

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