February Heart Month and CHD Awareness Week (Feb 7-14) were a buzz of activity - here are just a handful of outstanding examples, as well as a short video we created. Thank you to all of our member organizations for sending, sharing, and showing off your amazing campaigns. | |
Global ARCH and partner organizations took part in a remarkable webinar on Addressing Birth Defects Inequities: Prevention, Lifesaving and Lifelong Care. The 90-minute webinar aimed to raise awareness about congenital anomalies worldwide and to call upon policy makers, governments, and civil societies to invest in critical lifelong care for people living with congenital anomalies. It was also an opportunity to lift the success stories of patients and organizations to demonstrate how they have effectively advocated and served the needs of their communities. | |
Global ARCH also participated in the Centers for Disease Control and Prevention (CDC) live global bilingual Twitter/X chat, where we answered questions related to congenital anomaly treatments and prevention. It was a great opportunity to collaborate with allied organizations, and to spread the word about the impact of congenital anomalies and the work that we do at Global ARCH. Please check us out on Twitter/X, Instagram, Facebook, and LinkedIn! | |
Conference and Meeting Updates | |
Global ARCH was well represented at the European Congenital Heart Disease Organisation (ECHDO) bi-annual meeting in Milan, Italy, in conjunction with the European Paediatric and Congenital Cardiology (AEPC) psycho-social meeting. Amy Verstappen, Global ARCH president, spoke about the unique needs of people with childhood-onset heart disease, and the actions needed to improve the social and economic well-being of CHD patients in the global community. Dr. Edward Callus, AICCA (Italian GUCH Association), a key meeting organizer, said "Global ARCH played a crucial role in connecting patient associations across Europe and globally. Their efforts enriched our discussions, bringing diverse perspectives and strengthening our collective impact." | | |
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Ruth Ngwaro, Global ARCH Board member, was a featured speaker at the Second Annual Symposium of the Center for Integration Science in Global Health Equity held in Boston, MA on March the 14th, 2024. She discussed her history of being an ambassador for children like herself, reciting poems to increase awareness about congenital heart disease and heart health in Kenya as a child. She went on to explain her continued advocacy as a person with lived experience and is one of the current "Voices for PEN-Plus". Ruth continues to be an outspoken advocate for congenital heart disease support and services, and we value her contribution.
Photo: Global ARCH Board and Medical Advisory Board VP Disty Pearson; Maia Olsen, Technical Consultant, World Health Organization (WHO); and Ruth Ngwaro, Global ARCH Board member.
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A selection of Global ARCH LIVE webinars are now available on the Heart University website. You can find them in video Libraries> Lectures.
Upcoming Heart University webinars
April 25: Big Dreams for Tiny Hearts - Healthcare Disparities in Congenital Heart Disease - 4:00 PM EST.
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May 10-11: 6th International Conference on Cardiomyopathy in Children - 2 Day Virtual Event - 11 AM-5 PM EST.
This meeting brings together a multidisciplinary group of medical and healthcare professionals, including clinicians, genetic counselors, nurses, pharmacists, and researchers to discuss the most up-to-date evidence on the optimal management of pediatric cardiomyopathy and to shape the direction of future research on the disease.
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Conquering CHD Heart Connection
Join Conquering CHD on May 13-14 in Washington, DC for their Heart Connection Meeting. It's an opportunity to learn more about them, the impactful work of their 1st research grant recipients, and ongoing advocacy efforts.
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Global ARCH Welcomes New Project Manager | | |
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We are thrilled to welcome Nahimeh Jaffar to the Global ARCH team. Nahimeh has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals. She has worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Nahimeh loves art, history, travel, and museums, saying "I have made it my mission to attempt to see many, if not all, of the world’s natural wonders in this lifetime." Welcome Nahimeh! | | |
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What would you like you know about living with heart failure?
If you're a congenital heart disease patient living with heart failure then journalist Leigh Kamping-Carder wants to hear from you. She is writing a guide to heart failure for adults with congenital heart issues.
She says, "This topic is woefully under covered—and even writing the words “heart failure” feels like dropping a bomb into a bowl of Cheerios—but increasingly important for the CHD community.
She will draw on scientific research and interviews with healthcare providers and patients. To participate, please email Leigh at theheartdialogues@substack.com.
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Please donate today
Global ARCH is working hard to build a collective voice to transform lifelong outcomes for people with childhood-onset heart disease. With your help, we can continue to bring together our community and ensure our voice is being heard around the world where all key decisions are being made.
Together, we will improve and prolong the life of every heart child and adult – no matter where they were born, because no one deserves to fight this battle alone.
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We’d love to hear about what you and/or your organization is doing, and we will help spread the news. Please contact us at info@global-arch.org.
If you have a colleague who might like to join please ask them to visit our website.
To see our current list of member organizations please click HERE.
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