Global ARCH is proud to share World Beat , our new monthly newsletter. Our goal is to connect global CHD and RHD leaders to opportunities for education, awareness-building, and advocacy on behalf of those living with childhood-onset heart disease. We also want to keep our members up-to-date on Global ARCH and member-organization activities.

September 29 is #World Heart Day! We’d love to hear what your group is doing to celebrate. Send us a write-up and photos - and we’ll share your news. Send info to info@global-arch.org .

Global ARCH seeks applicants for our board of directors

Global ARCH is looking for applicants to serve on our governing board. Board service is open to all committed to our mission to improve worldwide life-long outcomes in childhood-onset heart disease through empowering patient and family organizations, and those directly affected by CHD or RHD are especially encouraged to apply.  All applicants should have leadership experience at an organization assisting CHD or RHD patients and/or providing advocacy, support, education, or medical services to related patient communities.  The ideal candidate will have one or more of the following: Global or US-based legal, financial, and/or advocacy background Communications training Experience with fundraising, and/or Be current or former residents of sub-Saharan Africa, the Middle East, or Central/South America Board members attend monthly phone meetings and are expected to spend a minimum of five hours a month on Global ARCH activities.  More information on Global ARCH Board service and how to apply can be found HERE . Deadline for applications is November 1st, 2019.

CHD to be included in the International Consortium of Health Outcomes Metrics [ICHOM]

Global ARCH and its member organizations are helping the International Consortium of Health Outcomes Metrics (ICHOM) . define the congenital heart disease [CHD] outcomes that matter most to patient and families around the world. This effort will help ensure that researchers and providers measure and improve the impacts of CHD that most impact patient health and well-being.

Children’s HeartLink defines Needs and Advocacy Priorities for the global CHD community

Children’s HeartLink has published The Invisible Child: Childhood Heart Disease and the Global Health Agenda , the first-ever policy papers aimed at highlighting the needs of children with CHD in low and middle income settings. It describes the burden of heart disease in children, outlines the barriers to improving access to quality care and provides examples of locally driven success. By 2030 it is predicted that heart disease and other congenital abnormalities will for the first time be among the leading five causes of child death worldwide.  As part of the Invisible Child campaign, Children’s HeartLink has defined key advocacy priorities needed to transform global outcomes in CHD. Global ARCH has endorsed these priorities and will be partnering with Children’s HeartLink to engage our members in reaching these targets. You can access the Children’s HeartLink The Invisible Child, linked from our website, HERE .

Global ARCH Strategic Plan now available

Want more information about Global ARCH’s goals and plans for the next two years? You can now read our full strategic plan HERE .

Global ARCH Global Leadership Summit to be held September 19-24, 2021

We are thrilled to announce that Global ARCH’s Global Leadership Summit will be hosted by the 8th World Congress of Pediatric Cardiology and Cardiac surgery (WCPCCS) September 19-24, 2021 in Washington, DC.  Building on the successful model used at our inaugural meeting , the Summit will bring together CHD and RHD patient and family leaders for peer training, collaboration, and interaction with the world’s expert in congenital and rheumatic cardiology.  We will again be offering registration support and need-based travel scholarships to CHD and RHD group leaders. More information about the program, eligibility, and the application process will be shared when available.

Global ARCH Meeting in Uganda

Global ARCH has been invited to participate in the World Health Summit in Kampala, Uganda April 27-28, 2020. This meeting will focus on the needs of patients living in Africa, and we hope to provide opportunities for our members to connect, strategize, and meet with local and regional government officials to educate about unmet needs in CHD. Stay tuned for more information!

Global ARCH Spotlight Congratulations to our co-founder and Chair,  Amy Verstappen , on the completion of her Masters thesis in Global Health, entitled  “Life Beyond Surgery: Addressing the Neglected Issue of Providing Long-Term Congenital Heart Care in Middle-Income Countries.”  Not only is this an outstanding achievement, but Global ARCH will be using her findings to inform our efforts to promote and support planning for long-term CHD care in low-resource settings.  Global ARCH member, Harikrishnan Anil Maya (Hari) , a congenital heart disease patient who was treated at Children's HeartLink Center of Excellence, Amrita Institute of Medical Sciences in Kochi, India, created his own 3D printer that is being used to help doctors treat other CHD patients. WATCH how Hari is giving back to his community, and contributing to science.

Global ARCH board member Bistra Zheleva was in New York for a week in September participating in the UN High-Level Meeting (UN HLM) on Universal Health Coverage during the 74th Session of the UN General Assembly (UNGA 74) , advocating for people and families affected by congenital heart disease and rheumatic heart disease and their access for high quality health care.

International news from the Congenital Heart International Professionals (CHiP) Network The CHiP Network is a non-profit organization that aims to develop a single global list of all congenital and pediatric cardiac professionals to provide educational information and updates to help further excellence in cardiac care. A Heart To Heart With Sunny Gavaskar  Google: India Currents 43 Tibetan kids with heart disease to receive free treatment  Google: Xinhua Xinjiang hospitals treat over 20000 foreign patients from neighboring countries  Google: Global Times  Batting for the Heart  Google:  newsindiatimes.com To join the CHiP Network click HERE .

News from the Congenital Heart Public Health Consortium

Children with Heart Conditions and Their Special Healthcare Needs A new   Morbidity and Mortality Weekly Report   from the Centers for Disease Control and Prevention (CDC) in the United States indicates that children with a heart condition are more likely to have special healthcare needs. 2016 Data from the National Survey of Children’s Health indicate that nearly 60% of children with a current heart condition have special healthcare needs, compared to 20% of children without a heart condition. These findings highlight the importance of developmental screening, so that children with heart conditions, such as CHDs, can get the services and support they need.   Continuing Education   (CE) is available for this article. If you would like to be added to their email list please contact chphc@aap.org .

2019 NGO Tech Report now available!

The Global NGO Technology Report is a biennial research project that seeks to gain a better understanding of how non-governmental organizations (NGOs) worldwide use technology. The report examines how NGOs use web and email communications, online fundraising tools, social media, mobile technology, and productivity software. To see how your country compares to others around the world click HERE !

Our Board Members

President & Chair: Amy Verstappen (US) Vice-president: Disty Pearson (US) Finance: Rob Lutter (Australia) Advocacy: Bistra Zheleva (US) Communications: Shelagh Ross (Canada)

Hannah Almira Amora (Philippines) Dr. Vikas Desai (India) Noémi D. de Stoutz (Switzerland) Heru Kustiawan (Indonesia)

Medical Advisory Board

Kathy Jenkins, MD, MPH Disty Pearson, Board Liaison and Vice-Chair Christopher Hugo Hamman, MD Babar S. Hasan, MD RK Kumar, MD Sivakumar Sivalingam, MD Liesl Zühlke, MD

Please keep us in the loop!

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 members please click HERE .

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