Below are the following organizations that are on the National level:
The Single Ventricle Outcomes NEtwork (SV-ONE) – Is a learning health network dedicated to transforming outcomes for individuals living with single ventricle heart disease across the lifespan. SV-ONE represents an evolution of two previous learning networks, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) and Fontan Outcomes Network (FON). As a part of SV-ONE, members contribute to improving long term outcomes and quality of life for patients through advanced data entry, innovative research, network-wide quality improvement projects, and collaboration. SV-ONE envisions a future where all affected by single ventricle heart disease can thrive and live long, fulfilling lives. SV-ONE’s mission is to build a connected community, accelerate discovery, transform care, & improve single ventricle heart disease outcomes across the lifespan. https://www.svone.org/
Adult Congenital Heart Association (ACHA) – Advocacy, support, education, and accreditation for adults living with CHD www.achaheart.org
The Children’s Heart Foundation – Funds research for congenital heart defect treatments and cures www.childrensheartfoundation.org
Congenital Heart Defect Coalition – CHD awareness, family support, and research fundraising. Our mission is to Unite and support the CHD community, increase public awareness and raise money for lifesaving medical research. From hospital recommendations to a shoulder to lean on, we offer community resources and a chance to build lifelong friendships. Together, we are united to make a change and become the greatest advocates for those affected by CHD. chdcoalition.org
Saving tiny Hearts Society – Supports research for CHD and related family programs savingtinyhearts.org
Bright Heart Foundation – Family support, advocacy, and CHD awareness. Grounded in love, with a primary mission of hope, the Bright Heart Foundation advocates for and supports children and their families living with the challenges of Congenital Heart Defect (CHD), while also providing support for the physicians who treat them. Provide the babies with developmental support equipment, and parents with the encouragement tools crucial to keeping their spirits elevated during their months/years of hospital stays. Support the physicians as they provide expert care for this group of very sick children. Support the Pediatric Cardiac Surgery Endowment Fund at Monroe Carell Jr. Children’s Hospital at Vanderbilt in their vital and ongoing research in the fight against CHD brightheartfoundation.org
The Brett Boyer Foundation – Supports CHD research, family & provider support, mental health assistance, and awareness; honors Brett’s life. The Brett Boyer Foundation was created in loving memory and in honor of our beloved daughter, Sadie Brett Boyer. Brett was diagnosed prenatally with Down syndrome and a congenital heart defect (CHD).Through her seven inspiring months of life, Brett was a bright light for us and everyone who loved her. Our mission is to fund CHD research, support CHD families & providers, and to celebrate the Down syndrome community. www.thebrettboyerfoundation.org
Sisters by Heart -Is an all-volunteer team of parents and individuals affected by single ventricle heart disease (SVHD). SBH was founded in 2010 when a small group of moms with newly diagnosed children realized the lack of support and resources for SVHD. Our organization began with a core mission of sending care packages to newly diagnosed families, and expanded to sending care packages to children preparing to undergo the Fontan surgery. In addition to our care packages, SBH also facilitates connections in our community through active partnerships with learning healthcare collaboratives, researchers, healthcare providers and other support organizations.Our goal is to foster education, advocate care and lend our voices and experiences so that we can improve outcomes, quality of life and ultimately one day – find a cure for SVHD www.sistersbyheart.org
Mended Hearts / Mended Little Hearts – Peer support and community programs for CHD patients and families. Young Mended Hearts® was created to give hope and support to young adults (ages 18-55 suggested) who have cardiovascular disease, including congenital heart disease (CHD). The program was as initially created to fill a gap for those who felt they didn’t quite belong in Mended Hearts® chapters, which are mainly made up of older adults who have heart disease, or in Mended Little Hearts® groups, which are mostly made up of parents of children born with heart conditions and their children and families. www.mendedhearts.org
Hope for Hearts – Advocacy, education, and support for individuals and families impacted by congenital heart disease. Hope for Hearts is dedicated to raising awareness, providing support, and assisting in funding research for children and families affected by congenital heart defects and transplants. Through compassion and advocacy, we strive to ensure that every heart has a chance to thrive, and no one faces cardiac challenges alone. We honor the resilience of those with heart conditions and their families. We are dedicated to educating families about early diagnosis, providing support for the whole family, and fostering lasting hope for healthier hearts. www.hopeforheartssd.org You can also follow them on Facebook!
Project Bubaloo – Is a Milwaukee-based non-profit organization with a mission of spreading community awareness and advancing the quality of care for those affected by congenital heart disease. Since our inception, we have raised over $900,000 for congenital heart disease. Our efforts are dedicated to funding quality, outcomes & research endeavors needed to support our vision of living in a world where CHD no longer limits a person’s life. Quality improvement, evidence-based practice and research projects that focus on improving care, treatment, or outcomes of patients with congenital heart disease will be considered for funding. All departments including but not limited to, surgery, anesthesia, nursing, cardio-genetics, PT/OT/Speech, behavioral health, nutrition, are encouraged to apply. Click the button below to view the guidelines and submission details. https://projectbubaloo.org/
Global ARCH (Global Alliance for Rheumatic and Congenital Hearts) – An international nonprofit that connects and empowers patient and family organizations working on congenital heart disease (CHD) and rheumatic heart disease around the world. They help build capacity, share best practices, provide advocacy training, and amplify voices to improve care, access, and outcomes for people with heart disease. https://global-arch.org/
Empower My CH (Congenital Heart) – A NIH‑supported digital platform and community designed to help adults living with congenital heart disease confidently navigate the healthcare system, stay informed, and engage in their care. Through a mobile and web app, participants get access to a digital medical passport, expert and peer guidance, credible CHD resources, personal stories, and a supportive network, all aimed at boosting confidence and making lifelong CHD care easier to manage. empowermych.org
Conquering CHD – National nonprofit providing education, advocacy, and patient-driven research across the CHD lifespan. Known for survivor stories, awareness campaigns, and pushing systemic change in CHD care. www.conqueringchd.org
World Of Broken Hearts – focuses on congenital heart defect awareness by showcasing their journey through photographs and storytelling. Here at World of Broken Hearts, we give the gift of high-quality photographs and family portraits so the families can cherish for a lifetime. Our mission is to be able to raise much-needed congenital heart defects and organ donation awareness that can lead to much-needed CHD funding. We want to be able to travel all over children’s hospitals in the U.S. and tell all these profound stories. www.worldofbrokenhearts.org/
The Bradley Rofer Foundation – At just six years old, he founded a successful flower business, Bradley’s Beautiful Bouquets. With the profits he earned, Bradley raised more than $3,000 for sick children in the community. His signature products were gorgeous flower bouquets, the first of which Bradley personally hand-picked from his family’s garden. Tragically, Bradley’s young life was cut short after being struck by a vehicle on his way to school in September 2022, only days shy of his ninth birthday. www.bradleyrofer.org/home
Beads of Courage, Inc – is a non-profit organization that is dedicated to improving the quality of life for children and teens coping with serious illness, their families, and the clinicians who care for them through our Arts-in-Medicine Programs. We believe in creating a context for caring transactions to transpire through our community and encouragement programs.https://beadsofcourage.org/
A Giving Heart Foundation – We’re funding revolutionary research. 30% of babies born with CHD are forced to undergo open-heart surgery. But at AGHF, we’re funding efforts by some of the world’s top pediatric specialists to develop a first-of-its-kind dissolvable stent designed especially for children. So no child will have to go through open-heart surgery again. And with enough funding, this stent could be only two years away. We’re supporting kids with CHD and their families. Kids with heart problems often don’t get to experience all the unworried, unabashed joy of running, jumping, playing and learning that most kids do. They sometimes have to endure multiple surgeries – which is traumatic on so many levels. And many of them face physical and development limitations. And it takes a toll. On them. And their families. That’s why we fund specialized whole-child-wellness programs to help make sure kids don’t just survive their childhood, but have the support they need to thrive in it.https://aghf.org/
Icing Smiles – Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. Since 2010, we’ve delivered more than 34,000 custom cakes to kids all across the country! https://www.icingsmiles.org/
Heart Heroes -In 2009, moms of children battling CHD wanted to empower their children throughout their CHD journey. They learned by wrapping their child in the simple idea of a superhero cape, their children felt invincible while visiting their cardiologists. In many cases, the children found comfort in their cape amidst a crowd of medical professionals, especially if they couldn’t have the comfort of their parents’ arms during some procedures. They found the “superpower” their children gained through the cape is something that should be shared with all CHD children. Heart Heroes was created with the hope that all children will feel these superpowers – and that their parents will be comforted knowing that the arms that always protect them can momentarily be substituted with the superpowers of the Heart Hero cape. https://heartheroes.org/
Enduring Hearts – Enduring Hearts funds research to increase longevity and improve the quality of life for children with a transplanted heart. Heart transplantation is a life-saving procedure for over 10,000 children born with inoperable heart defects or that later suffer from heart failure caused by cardiomyopathy or other disorders. Currently a heart transplant is not a cure, but a bridge to life. The average lifespan of a transplanted heart is less than 20 years. We believe a child’s heart transplant should last a life, which is why we fund the critical research needed to eliminate rejection, prevent life-threatening complications, and reduce the risk of needing a second transplant, giving each of these extraordinary kids a chance to live the future they deserve. Our Vision – We envision a world where every child who needs a new heart receives one that lasts a lifetime. https://www.enduringhearts.org
Every 100th Heart – Nearly 2.5 million Americans live with CHD today. Yet CHD remains underfunded, underrepresented, and often overlooked in national conversations about research, innovation, and access to care. CHD affects people for life. But our systems are not built around lifelong care. Patients and families often face high costs, limited access to specialists, and uneven support from federal agencies and healthcare programs. Promote insurance coverage and access to care for CHD patients. We advocate for policies that ensure comprehensive, uninterrupted health coverage from infancy to adulthood. Prioritize federal funding for CHD research. We are advocating for a dedicated, sustained federal investment to accelerate CHD research, innovation, and care. Advance access to CHD-specific treatments and devices. We’re working to ensure FDA and CMS regulatory pathways prioritize approval and coverage of CHD-specific medical devices, therapies, and interventions. Ensure equitable access to heart transplants for CHD patients. We’re modernizing transplant eligibility criteria, improving access to specialized transplant centers, and advocating for policies that recognize the unique medical complexities of CHD patients. We advocate for policies that ensure comprehensive, uninterrupted health coverage from infancy to adulthood. Prioritize federal funding for CHD research. We are advocating for a dedicated, sustained federal investment to accelerate CHD research, innovation, and care. Advance access to CHD-specific treatments and devices. We’re working to ensure FDA and CMS regulatory pathways prioritize approval and coverage of CHD-specific medical devices, therapies, and interventions. Ensure equitable access to heart transplants for CHD patients. We’re modernizing transplant eligibility criteria, improving access to specialized transplant centers, and advocating for policies that recognize the unique medical complexities of CHD patients. https://every100thheart.org/about-us/
Hollys Heart – The mission of Holly’s Heart is to transform the medical experience by providing patients with functional apparel that is a comfortable and empowering alternative to the hospital gown. It all started with an idea. That idea turned into a quest. A quest to create a better alternative to the dreaded hospital gown. It had to be soft. It had to provide ample coverage. It had to allow room for monitor lines, IVs, casts, ports, and all the other things that can make a hospital stay uncomfortable; yet not be too bulky. It had to be functional. For younger aged patients, it had to be fun! For older patients, it had to be timeless. https://hollysheart.org/