August, 2023

World Congress Special Update, and more!

The Global ARCH board members and volunteers are busily preparing for the World Congress - just 2 weeks to go! We are co-hosting the Global Health & Advocacy tracks, and have 84 organizations from 37 countries currently registered to attend. Topics include Achieving our Right to Health: Advocacy for Change, The Power of Patient-Provider Partnerships, and Empowering Patients and Families to Thrive: Education and Support. We will also all get a great opportunity to meet and network at the Global Village, where each organization has their own table display, and will be presenting a poster about their organization.

We are also hosting 63 Global ARCH member organizations from 24 countries for our full-day Global ARCH Summit, hosted by the American College of Cardiology. As well, several Global ARCH members have been invited to speak as faculty. We anticipate a very busy, exciting, and rich opportunity to learn more about each other. We are looking forward to working on establishing priorities for the future, and on the many ways for our members to be engaged. Please stay tuned for photos and videos. You can stay updated by following us at @globalarchorg on Twitter/X, Instagram, and Facebook.

This Call to Action will be presented at the 8th World Congress of Pediatric Cardiology & Cardiac Surgery in Washington, DC. It is an urgent call for action by all governments, all health and development agencies, and the world research and academic community to protect and promote the health of all people with pediatric and congenital heart diseases. To learn more and to add your name please click on the link below.

Welcome New Medical Advisory Board Members

We are delighted to welcome the following new members of our Medical Advisory Board:

Dr. Jack Colman is a Professor of Medicine and of Obstetrics and Gynecology at the University of Toronto and Cardiologist and past Director of the Toronto ACHD Program, Peter Munk Cardiac Centre, University Health Network.

Dr. Matt Oster is a Pediatric Cardiologist at Children's Healthcare of Atlanta as well as a medical officer at the CDC's National Center on Birth Defects and Developmental Disabilities. 

Dr. Sandra da Silva Mattos is currently the Medical Director of the Maternal-Fetal Cardiac Unit of the Royal Portuguese Hospital, President of The Heart Circle (CirCor), Director of Caduceus, and a researcher with the Keiso Asami Immunopathology Laboratory (LIKA) – UFPE.

Dr. Fenny Fiindje Shidhika is a Consultant Paediatric Cardiologist and Head of Department, Ministry of Health and Social Services, in Windhoek, Namibia.

Dr. Alexis Palacios-Macedo is Chief of Congenital Heart Surgery at the Instituto Nacional de Pediatría (INP) and Medical Coordinator of the ABC Medical Center/Kardias Congenital Heart Surgery Program in Mexico City.

Dr. Dominique Vervoort is a PhD Candidate and Vanier Scholar at the Institute of Health Policy, Management and Evaluation and the Division of Cardiac Surgery at the University of Toronto.

To read the complete bios please click HERE.

Welcome New Members!

A BIG welcome to our newest member organizations – it's great to have you as part of this growing family of CHD/RHD patient and family organizations. Thanks to each of you, we have 80 members organizations from 43 countries around the world!

Mending Kids – US

Fundación Maria – Honduras

Zipper Sisters - US

Operation Corazon - Mexico

Sisters by Heart - US

William Novick Global Cardiac Alliance - US

Faayo Community Heart Health Initiative - Uganda

Ollie Hinkle Heart Foundation - US

Namibia Rheumatic and Congenital Hearts – Namibia

Círculo do Coração - Brazil

Global ARCH Member SPOTLIGHT

Neistinn‘s Children’s Heart Foundation in Iceland

I’m a mother of two, my daughter who is about to turn 15 has a complex congenital heart defect and has had several heart operations throughout her life at Children’s hospital in Boston.

When I was pregnant with her and found out that she had CHD, I immediately started to look if there was a community where we could seek support and that’s when I got to know Neistinn. There, I immediately received invaluable help and support during a difficult time. I knew then that I wanted to help others when I had the strength to do so. I became a part of the organization after her first operation as a board member, then Chairman and today I am the only employee of the organization. My top goal for Neistinn is that all parents of children with congenital heart defect will know that they can contact us and get the help they need. Read more...

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.