National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC)
- NPC-QIC is a network of over 60 pediatric cardiology care centers across the United States, Canada and the United Kingdom
- Mission is to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease, as well as their families
- Work together with families, clinicians, researchers and patients to dramatically improve the outcomes for children with cardiovascular disease
Fontan Outcomes Network (FON)
- FON is a learning network created by – and for – a community of patients, families, clinicians and researchers who seek to transform outcomes for all people affected by single ventricle heart disease
- Mission is to optimize longevity and quality of life by dramatically improving physical health and functioning, neurodevelopment, and emotional health and resilience for individuals with Fontan circulation and their families
Sisters By Heart
- Sisters By Heart is a volunteer-led organization striving to help families dealing with a new single ventricle diagnosis
- Provide care packages to make hospital stays easier and resources to help families better understand the single ventricle journey
- All of the volunteers are parents and patients who have HLHS or other single ventricle defects, and who uniquely understand what you are going through