June, 2023

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.

Upcoming Webinars

Member Organizations - Stay Connected

Welcome New Members!

A BIG welcome to our newest members – it's great to have you as part of this growing family of CHD/RHD patient and family organizations. As of June 1, thanks to each of you, we have 70 members organizations from 42 countries around the world!

As the numbers of patients with CHD grows in some parts of the world, our collective voice is becoming louder. There are now more adults with CHD than children, and we are learning to speak up to make our needs be known and understood. We now have decades of evidence to show what it takes to help these children, and those with rheumatic heart disease, survive and thrive. It is our responsibility to ensure that EVERY PERSON with childhood-onset heart disease – no matter where they are born – has a fighting chance to live their best life. That's why every time a new member joins we feel that our voice is getting louder and we are getting closer to achieving our goals. Let's work together to make a difference.

Please welcome:

Dar Elteb Eltakhassosi Charity Hospital – Egypt

Fundación Corazoncitos – Uruguay

Fundación El Cielo Para los Niños de Ecuador – Ecuador

Kawasaki Disease Canada

Lilo México – Mexico

Los Cabos Children´s Foundation – Mexico

Neistinn, Children's Heart Foundation – Iceland

Patiëntenvereniging Aangeboren Hartafwijkingen (PAH) – Netherlands

Rheumatic Heart Disease Philippines

Somerville Heart Foundation – UK

SIUT – Pakistan

The Heart Chamber – US

8th World Congress for Pediatric Cardiology and Cardiac (WCPCCS) Surgery Update

Global ARCH members invited to attend the World Congress will be receiving information about what to expect at the World Congress, how to write and submit an abstract, etc. so please don't panic! We recently hired an events manager, and you will be hearing from her as well to discuss details. We know the registration process has been confusing but we will make sure you have all the information you need well before August. Please stay tuned for updates!

Global ARCH Member SPOTLIGHT

Read Jeffrey Estrella's account of the organization he founded - Rheumatic Heart Disease Philippines - to help his wife with RHD, and others. "At first we didn’t know anything about RHD, but my search on social media connected us to a community of other RHD patients and their families. Together we exchange knowledge, and share experiences about the hardships and sacrifices we have experienced." To read that blog article, and others, click HERE.

Registration is now open. This Congress aims to foster an inclusive environment where researchers, healthcare professionals, community leaders, and individuals affected by RHD can come together to share knowledge, exchange ideas, and explore innovative approaches to tackle this disease.

"Nothing for us, without us": opportunities for meaningful engagement for people living with non-communicable diseases

To date the WHO has published two "Intention to action series":

1. People power: Perspectives from individuals with lived experience of noncommunicable diseases, mental health conditions and neurological conditions.

2. Regional reflections: Analysis from informal regional consultations with people living with noncommunicable diseases and mental health conditions.

In 2023 they published "The Framework".

Next steps, and opportunities for Global ARCH member involvement:

Come together as a global community in the lead up to the 2025 UN High-Level Meeting on NCDs: 

• Pilot project for the implementations of the Framework 
• WHO Symposium with people living with NCDs, and mental health and neurological conditions;
• WHO roster of consultants with lived experience of NCDs, and mental health and neurological conditions;
• Establish and launch the GCM/NCD Working Group on Meaningful Engagement of People Living with NCDs, and mental health and neurological conditions
• Policy briefs to support the implementation of the Framework at the regional level

To stay up to date and/or to get involved please visit their website at https://ncdalliance.org.

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.