International Ventilator Users Network

The International Ventilator Users Network (IVUN) is a nonprofit network of mechanical ventilation users, respiratory health professionals, and ventilatory equipment manufacturers. Its focus is on the health and independent living of ventilator users, whether they are using assisted ventilation long-term – at home or in nursing facilities—or short-term in emergency rooms and critical care units.

Many ventilator users have neuromuscular conditions, such as respiratory polio or post-polio syndrome, amyotrophic lateral sclerosis (ALS), muscular dystrophy, spinal muscular atrophy (SMA), spinal cord injury (SCI), or congenital central hypoventilation syndrome (CCHS). Historically, IVUN’s efforts have been primarily addressed to ventilator users with neuromuscular conditions. But people who have chronic obstructive pulmonary disease (COPD) or obesity hypoventilation syndrome may also need to use assisted ventilation.

IVUN’s mission is “to enhance the lives and independence” of ventilator users “through education, advocacy, research, and networking” among ventilator uses, respiratory health professionals, and ventilatory equipment manufacturers. Support comes from individual members, donors, and sponsors.

IVUN’s parent organization is Post-Polio Health International (PHI). It shares that organization’s headquarters and staff in St. Louis, Missouri, as well as its volunteer Board of Directors. IVUN’s publications, website, and volunteer advisory boards are its own, however.

IVUN publishes (both online and in print) authoritative medical information based on interaction between ventilator users and healthcare professionals. Currently, users can find online free of charge a 16-page introductory document describing the history of ventilators, the various types of ventilators, and the types of user-interfaces; a packet of documents dealing with emergency medical care for home ventilator users (checklists for users, caregivers, physicians, and Emergency medical services personnel); and a comprehensive Home Ventilator Guide which provides technical information on home/portable ventilator equipment from manufacturers worldwide. Past issues of IVUN’s quarterly newsletter, Ventilator-Assisted Living, are also online. IVUN’s staff maintain a telephone answer-line and answer e-mail inquiries during business hours.

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