CHD Collaborators
NPC QIC
The National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC)’s mission is to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families. In 2012, Sisters by Heart formally partnered with NPCQIC as its parent lead, bringing a stronger and larger parent community into the collaborative to work side by side with a network of over 60+ cardiac centers across the country.
Fontan Outcomes Network
The Fontan Outcome Network (FON)’s mission is to optimize longevity and quality of life for individuals with single ventricle defects (and their families), by improving physical health and functioning, neurodevelopment, resilience, and emotional health. FON’s vision is to fundamentally transform outcomes for individuals with Fontan physiology. Sisters by Heart is highly dedicated to FON’s mission and vision. Two of our board members serve as parent leads on FON’s Executive Leadership Team.
Cardiac Networks United
Cardiac Networks United (CNU) aims to accelerate improvements in health outcomes for patients with pediatric and congenital heart disease by uniting and aligning networks, organizations, and stakeholders across the field to advance research and improvement efforts through collaboration. Sisters by Heart collaborates with CNU, representing the single ventricle community, in efforts around health disparities, data gathering from the patient community, and quality improvement projects.
Mayo HLHS Consortium
The Todd and Karen Wanek Family Program for HLHS at Mayo Clinic created the HLHS Consortium to improve access to clinical trials and allow researchers to pool scientific knowledge with top cardiovascular programs around the country. The consortium helps decrease the amount of time from research and discovery to the clinical application of innovative cell-based therapies. Sisters by Heart values patient and parent involvement in the design, implementation, and reporting of results for clinical research and we are proud to be one of two parent-focused organizations to join the HLHS Consortium.
Additional Ventures
Additional Ventures exists to help children with congenital heart defects live longer, healthier lives by accelerating research toward a functional cure. To ensure that every child with a CHD lives a long, healthy life with a bright future, Additional Ventures works closely with diverse members of the scientific and clinical communities to address the most pressing challenges in the CHD field by fueling discussion, funding innovation, and sparking collaboration. Sisters by Heart is grateful to Additional Ventures for its commitment to finding a functional cure for single ventricle defects, and looks forward to continued collaboration to align mission, values, and goals.
Hayden’s Heart
Hayden’s Heart mission focuses on raising CHD awareness and to keep Hayden's memory alive by helping families affected by CHD. Ady Dorsett, Hayden’s mom, serves as a Sisters by Heart’s Hope After Loss liaison and provides guidance to families grieving the loss of their warrior. Sisters by Heart supports Hayden’s House of Healing and retreats available to mothers and fathers who have lost a child to single ventricle defects.
Transplant Families
Transplant Families exists to serve pre- and post-transplant families – to provide education, support, and resources on a national level. Transplant Families founder, and heart mom, Melissa McQueen, serves on national boards and collaborative efforts to improve outcomes for children needing heart transplantation. Sisters by Heart values its partnership with Transplant Families in bridging gaps between living with single ventricle anatomy and being listed for cardiac transplantation.
Global Arch
The mission of the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH) is to improve worldwide life-long outcomes in childhood-onset heart disease through empowering patient and family organizations. Through this partnership, Sisters by Heart connects with organizations from around the world to learn, collaborate and speak together about the unmet needs of those living with congenital heart disease.
Heart University
Heart University is a free web-based global education resource and training tool with an eye toward pediatric congenital heart disease, created by top experts in the field. Sisters by Heart partnered with Heart University to bring single ventricle education and resources to providers, parents, and patients in both written and webinar format.
Action
Action’s goal is to improve critical outcomes for children with heart failure by uniting providers and families, sharing data and outcomes transparently, improving education and standardizing best practices. Sisters by Heart collaborates with Action’s leadership team to help bridge the gap for single ventricle patients and families whose journey leads to heart transplantation.
Ollie Hinkle Heart Foundation
Ollie Hinkle Heart Foundation (OHHF) recognizes the complex and layered needs of the pediatric heart disease community. Through a blend of community outreach, mental healthcare access, support for technology and research, and collective community building, OHHF's mission is to address the unmet needs of heart families while transforming the future of pediatric heart care. Our vision is that every heart child and family will be wrapped in love to eliminate the traumas endured by living with a chronic illness.