Protecting the health and rights of children facing heart issues isn’t optional. It’s critical.
To create the change we need to see, we advocate with decision-makers to ensure ALL children with childhood-onset heart disease have access to high-quality and affordable pediatric heart care.
Driving policy change in pediatric heart care
We educate decision-makers and other key stakeholders – not just in the countries where we’re active, but also globally – to inform government priorities, investments, strategies and policies to move the needle for children in need of heart care. This commitment led to the creation of our Invisible Child program.
Providing education for pediatric nurses
Nurses are often the closest member of the heart care team to a child and their family after heart surgery. Yet in underserved countries, academic training may not equip them with the tools and skills they need to support a pediatric cardiac patient and hospitals often treat them like an expendable resource. What can we do about it? A lot.
Advocating for children through post-surgery care education
Children are often discharged from the hospital in a matter of a few days following major heart surgery. To ensure parents and caregivers know how to best care for their recovering child, educational resources for post-surgery at-home care are of paramount importance.
Our advocacy efforts focus on creating change in four priority areas of pediatric cardiac care.
Increasing the capacity
Building the workforce
Closing the data gap
Boosting financing
Meaningful collaborations: The foundation of impactful change
Children’s HeartLink connects people, ideas and resources to drive solutions. We seek opportunities to strengthen our advocacy through effective collaboration and leveraging resources in support of a global health agenda inclusive of the needs of children with heart disease.
We engage with global organizations to encourage and support global advocacy efforts.
Children’s HeartLink is in consultative status with the United Nations Economic and Social Council (ECOSOC). We aim to be recognized as an expert who can actively engage with UN programs, funds and agencies as well as participate in events and activities.
Providing key recommendations for policy makers
- In partnership with the Newborn Foundation and our partners in India, we developed recommendations for newborn screening for congenital heart disease in low- and middle-income countries.
- We led the writing and development of the Recommendations for developing effective and safe paediatric and congenital heart disease services in low-income and middle-income countries: a public health framework, the first of its kind document aimed at informing policymakers and hospital administrators when they are developing pediatric cardiac services.
Making policy change for children with CHD
- Children’s HeartLink supported the development of an innovative program for congenital heart disease that contributed to significant reductions in infant deaths in the Indian state of Kerala.
- Our work with Kerala’s government led to a policy change and made newborn screening mandatory in 2020.
Building a global movement for childhood-onset heart disease
- Global ARCH and Children’s HeartLink launched the Global Coalition for Pediatric and Congenital Hearts, a coalition of more than 140 individuals and organizations, that aims to reduce inequities in access to quality pediatric cardiac care worldwide through collaborative advocacy efforts.
- Published key advocacy resources to educate government, multilateral institutions and advocates including the Declaration of Rights of Individuals Affected by Childhood-Onset Heart Disease, the Congenital Heart Disease Facts Sheet and an Advocacy Toolkit, all developed in partnership with Global ARCH.
- We spearheaded the advocacy committee for the 8th World Congress of Pediatric Cardiology and Cardiac Surgery, ahead of which we secured 1,500 endorsements for the Washington D.C. Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases.
Be the change you want to see
Looking to drive advocacy efforts in your own community? The Advocacy Toolkit is your go-to resource. Whether you’re an individual who wants to help or are part of a patient and family organization, a civil society group, a nongovernmental organization (NGO) or a professional organization/society, this toolkit can be adapted to reflect the situation in your country and region.