About Us

Global ARCH / About Us

Global ARCH is an alliance of childhood-onset heart disease patient and family organizations and stakeholders from around the world.

Our Mission

To improve worldwide lifelong outcomes in childhood-onset heart disease through empowering patient and family organizations. 

Our Vision

Every person affected by childhood-onset heart problems receives the lifelong care they need to live life unlimited by their disease

What We Do

We connect over 110 organizations across 47 countries, including more than 75 patient and family-led organizations focused on childhood-onset heart disease (COHD). We provide these organizations with the tools, knowledge, and resources they need to empower communities and take action. By fostering collaboration, we facilitate the sharing of best practices and strengthen efforts to address the needs of underserved populations. Our work centers on capacity-building, improving care, and supporting lives impacted by COHD, including rheumatic (RHD) and congenital heart disease (CHD). Our work focuses on 4 key areas, including a global community, capacity building, advocacy, and meaningful inclusion of patients and families.

Global Network

By fostering a global collaboration, we create opportunities for organizations to share resources, exchange best practices, and learn from one another’s experiences, enhancing services and support on a global scale. 

Advocacy for Change

We collaborate with global partners to accelerate policy changes that address healthcare disparities and promote equitable access to care, especially in underserved regions.

Capacity Building

We offer training, leadership development, and toolkits that equip local organizations to provide better services, resources, and peer support to patients and families, strengthening communities from the ground up.

Patient and Family Inclusion

We promote the inclusion of patients’ and families’ perspectives in research and decision-making processes, ensuring their voices shape the future of care.

 

Our Commitment to Health Equity

 

Health equity is at the core of our mission. From building partnerships with local organizations to advocating for global policy changes, we focus on closing healthcare access gaps for vulnerable populations. Our programs aim to ensure that no child or adult living with CHD, RHD, or other COHD is denied the quality care they deserve due to their socioeconomic status or geographic location. 

 

Our Impact

 

Through our global network, we unite organizations to expand support, raise awareness, and advocate for better healthcare systems. Our programs strengthen patient communities, amplify voices on the global stage, and promote long-term solutions that improve the quality of life for people living with heart disease.

 

Our History

 

The Global Alliance for Rheumatic and Congenital Hearts (Global ARCH) began with a visionary group of congenital heart disease and rheumatic heart disease leaders, each directly affected by childhood-onset heart disease. They shared a vision of transforming global congenital heart disease and rheumatic heart disease patient outcomes through empowering patient and family-led organizations.

In the summer of 2017, they convened the first International Congenital Heart Leadership Summit (ICHLS), which brought together 30 congenital heart disease and rheumatic heart disease leaders representing 21 countries on six continents. In order to create a stronger voice on behalf of congenital heart disease and rheumatic heart disease patients and families, the participants agreed unanimously to form a new, independent non-profit organization called the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH). The collective vision for Global ARCH is to improve and prolong the life of every heart child and adult – no matter where they were born.

 

Nahimeh Jaffar 

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, President

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.