February 4, 2025
CHD Awareness Week: Global Impact Through Advocacy Leadership in WHO Birth Defects Consultation
Bistra Zheleva, vice president of global strategy and advocacy at Children’s HeartLink, writes about the recent work Children’s HeartLink has been doing with the World Health Organization and the impact it will have for children with congenital heart disease worldwide.
As we begin congenital heart disease (CHD) Awareness Week (February 7-14), I’m thrilled to share about the remarkable work that’s been happening over the last several months that will have a transformative effect on the care of children born with CHD and other birth defects around the world.
Over my past 21 years with Children’s HeartLink, I’ve witnessed firsthand how passionate advocacy can spark global change. Since last September, I have had the privilege of contributing my expertise to a critical World Health Organization (WHO) consultation that will help shape birth defects care worldwide.
WHO consultations have an intense process that takes place over many months, with multi-day sessions bringing together experts from around the world. The sessions include hours of presentations and in-depth discussions and are facilitated by WHO technical staff. This WHO consultation aims to create comprehensive frameworks and actionable recommendations for governments, specifically in low- and middle-income countries (LMICs), to establish sustainable birth defects screening, diagnosis, management and long-term care programs. This was initiated in response to a 77th World Health Assembly Resolution in 2024 calling on UN member states to accelerate progress towards reducing maternal, newborn, and child mortality in order to achieve Sustainable Development Goal targets 3.1 and 3.2.
Join the discussion
In recognition of Congenital Heart Disease Awareness Week, the Global Coalition for Pediatric and Congenital Hearts invites you for a discussion about sustainable financing for pediatric and congenital heart care in Latin America.
Hear from patient advocates and clinicians from Peru and Chile about the challenges and opportunities to drive sustainable financing solutions for pediatric and congenital heart care locally and rally support for the right to health for all people without suffering financial hardship. Advocates will leave this educational webinar equipped with tools and examples to engage their governments on sustainable financing for pediatric and congenital heart care through our World Health Assembly Resolution campaign.
Until now, the world has lacked a global framework for addressing birth defects, leaving LMIC governments without a clear direction for how to care for children born with these often life-threatening conditions. Thanks to the leadership of many advocates, including myself and my global peers, we are making significant strides.
CHD is the most common birth defect affecting 1 in every 100 live births. It is the birth defect that causes the most infant deaths worldwide, and most of them in LMICs. Yet it has remained underfunded and underprioritized compared to other health issues. I am beyond excited that this consultation is placing CHD front and center in the broader conversation about birth defects, receiving the global attention it deserves.
The progress we’re seeing is only possible because of the many people who believe all children deserve access to heart care—no matter where they’re born. It’s the years of advocacy, investments of time, expertise and funds, and change happening on the ground that elevate these efforts. These guidelines will shape the future of birth defects care and create real, sustainable change that will impact millions of children in LMICs for generations to come.
Children’s HeartLink is one of the few organizations leading this effort to revolutionize pediatric heart care globally. This is the important work that you, our supporters, are helping to bring to life.
As we celebrate CHD Awareness Week, I want to thank all of you. Your generosity and commitment drive measurable, lasting change that will be felt today and tomorrow. We are making an extraordinary impact together, one that will shape the future of birth defects and CHD care for generations.
