One year ago, Global ARCH lost a guiding light. Noemi de Stoutz was a trailblazer and dedicated champion of CHD advocacy and support. Born in Switzerland with complex CHD, Noemi survived far beyond expectations. Despite her limitations, she spent her life helping others as a palliative oncology physician. She was forced to retire early due to...
This webinar highlights the global burden of disease for congenital and rheumatic heart disease and the challenge of accessing treatment in low- and middle-income countries. It also introduces the Call to Action campaign, which will be introduced at the 8th World Congress of Pediatric Cardiology & Cardiac Surgery (WCPCCS) in August, 2023. The webinar presenters...
CHD Awareness Day recap Every February 7-14 patient and family advocates around the world participate in Congenital Heart Disease (CHD) Awareness Week. It is a time to raise awareness of CHD in their local communities. Global ARCH and Children’s HeartLink are two leading childhood-onset heart disease advocacy organizations that work to improve lifelong outcomes worldwide. What is CHD? CHD...
1. What would you suggest to parents of CHD children when it comes to building resiliency so that mental health issues can be addressed early? I’d like to first say that I have a great deal of respect for parents and caregivers of children with CHD – I recognize how stressful their own experiences can be...
This Congenital Heart Awareness Week (February 7-14) I’m “celebrating” from my bed in a downtown Toronto hospital. I’ve been here too many times in the past 11 months, since just before we had the first COVID-19 lockdown. My heart defect, called tetralogy of Fallot, started causing my heart to beat so fast that it feels like I have...
Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).
Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.
Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world. Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.
