Below are the following organizations at the international level:
Canadian Congenital Heart Alliance (CCHA) – We advocate for and enrich the lives of people living with CHD through awareness, education, research and support. To be the leading voice for enriching the lives of Canadians with CHD. Building a dedicated CHD community that fosters compassion, empowerment and collaboration. https://cchaforlife.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/
Tiny Tickers – We’re a small charity with big ambitions. We’ve got a proud track record of helping improve the detection, care and treatment of babies with serious heart conditions, and we have exciting plans to do even more to help in the future. We want every baby and their family to receive the same high quality, consistent and compassionate care wherever they are based in the UK. And we want their families to receive the best possible information and support. www.tinytickers.org/
Heart Gift – Each year, over 1 million children are born with congenital heart defects (CHD), yet only 10% have access to the specialized medical care essential for their survival. Since 2000, we’ve been committed to ensuring every child with CHD receives the life-saving treatment they deserve. Thanks to the unwavering support of donors, medical professionals, and volunteers, we’re saving more lives every day.HeartGift serves children in remote areas of the world with limited access to specialized medical care. Many suffer from congenital heart defects that, if untreated, lead to chronic illness and early death. With a single surgery, these children’s hearts are fully healed, allowing them to live long, healthy lives. https://heartgift.org/
Tiny Hearts Can – We are the ONLY charity in Canada working to help more babies get their Congenital Heart Defect (CHD) diagnosis as early as possible through educational outreach initiatives. An early diagnosis can make all the difference in reducing longterm complications and/or death. From advocating to include mandatory Pulse Oximetry screening after birth, to ensuring all sonographers receive regular CME credits in cardiac screening, our team of passionate individuals will work to give families with CHD the best start possible. Our experts are spearheading CHD research in Alberta through their clinical and research efforts. Understanding how areas such as education and tele-health communications in rural areas influence detection is vital to ensuring positive outcomes for CHD families. Early detection plays an essential role in saving money and resources for both local hospitals and governments alike. https://www.tinyheartscan.org/
Little Hearts Matter – Is the only charity in the UK dedicated to supporting and empowering anyone affected by the diagnosis of a single ventricle heart condition – or half a working heart. We support families along every step of their journey, from initial diagnosis, through treatments and into life at home. Our core focus is to offer support and information to our members. However, we’re equally committed to raising awareness of our children’s conditions and the challenges these bring to their families. In doing so, we actively seek ways in which we can take our members’ voices into arenas for change. https://www.lhm.org.uk/