April, 2023: Global ARCH membership has reached over 50 patient and family member groups, and is growing fast as our impact reaches across the globe. Our member organizations continue to be awe-inspiring, as they work tirelessly, often in hugely difficult circumstances, to provide resources, opportunities, and hope for their CHD and RHD patient and family members. Our job at Global ARCH is to empower them by creating educational and networking opportunities and resources, and guidance and support with their ongoing work. | |
Our Leaders' Forum is held the first Friday of the month at 9 a.m. EST via Zoom for all member organization leaders. It's proven to be a highly anticipated event, providing an opportunity to share experiences, network, and offer support - and it's always a lot of fun! If you are the leader of an organization, please visit the link above to register. Please click HERE for more information. | |
We are so excited to announce that over 40 Global ARCH member organizations will be attending the 8th World Congress of Pediatric Cardiology & Cardiac Surgery in Washington, DC August 27–September 1. The event will begin with the Global ARCH Summit, a unique opportunity for patient and family leaders to learn from each other and define a common agenda. A dedicated Advocacy conference track will highlight the major impact that patient and family groups can have on research, quality improvement, healthcare policy, and patient and family well-being. The first-ever Global Village will offer each invited organization exhibit space for participants to showcase their work. Each day will also feature a packed agenda of clinical and professional presentations, plus highly interactive meet-ups on topics relevant to CHD and RHD support and advocacy. Please stay tuned for more updates! | |
New Global ARCH Resources | |
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We have updated our Advocacy Toolkit, and will continue to develop it to help you successfully advocate in your communities. The Toolkit has 5 sections:
- Why: Define the problem
- What: Define advocacy goals
- Who: Determine target audiences
- How: Making and executing an advocacy plan and developing key messages
- Measuring success: Change measuring success to measuring impact
It provides key facts and messaging, real-life examples, ways to build partnerships and understand who the decision-makers are and how to target them, how to make an advocacy plan, and measuring success. It also has resources and sample letters.
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Mental health is a BIG topic in CHD, and an issue that is largely overlooked in the medical community. Clinical psychologist Dr. Adrienne Kovacs offers useful answers to some of the most pressing questions we get from people living with CHD. She covers building resiliency, mental health contributing factors, finding support, self-care strategies, and the various pharmacologist treatments. Click HERE to read what she has to say.
For more useful CHD and RHD resources, please click HERE.
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Recent Activity Highlights | |
Global ARCH was invited to participate in a 2-day ACHD symposium "Growing Up with Congenital Heart Disease", hosted by Amrita Hospital in Kerala, India. A law has recently been passed that ensures that every child in India born with a birth defect has access to state-covered treatment. This is largely thanks to Amrita's advocacy work on behalf of patients and their families, which has also resulted in their hiring of a dedicated ACHD cardiologist, Dr. Navaneetha Sasikumar. | |
Appu K. George, representing Congenital Heart Defects Protective Mission (CHDPM) in India, spoke about his personal journey overcoming the challenges of living with a complex heart defect.
Global ARCH executive team member Grace Jerald and founder of CHD Malaysia, was an important link in helping to develop the Asian Network as the Asian regional representative.
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Global ARCH president, Amy Verstappen, was invited by India's Dr. Krishna Kumar to speak about the importance of lifelong care for people with CHD. The meeting also provided a welcome opportunity for Global ARCH members to meet in person (finally!), and for CHD patients and parents to exchange stories and experiences (there was a lot of crying and laughing.) | | |
Above: Theresa, Amy, Grace, Veera, and Hari (missing from the photo: Appu and Sajani). |
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Belen Blanton Altuve, founder of Fundacion Estrellita de Belen, and Amy Verstappen, attended the American College of Cardiology Conference held in New Orleans, LA. This was Belen's first travel adventure representing Global ARCH, and she was a pro!
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Farhan Ahmad also attended the American College of Cardiology Conference via Zoom, and spoke about the burden of CHD in Pakistan, and the role of the Pakistan Children's Heart Foundation (PCHF) in helping alleviate that burden. Farhan said, "I am enthusiastic and hopeful that this initiative will help to increase awareness of CHD across the globe, and give PCHF some well-deserved recognition of bringing to fruition the dream of building Pakistan's first Children's Heart Hospital and Research Center." | |
The International Conference on Birth Defects and Disabilities in the Developing World, held March 1-4 in Santiago, Chile, featured a panel on congenital heart defects moderated by Global ARCH board member Bistra Zheleva. Cecilia Ramirez, leader of Chile’s Fundacion Corazones Luchadores, spoke about patient and family advocacy, and Dr. Babar Hasan from Pakistan, Dana Weber from Boston, and Dr. Sandra Mattos of Brazil addressed the major impact that CHD, the most common birth defect, has on childhood survival and life-long wellbeing.
Bravo to all of our members who have presented at conferences and meetings so far this year, both as Global ARCH representatives and on behalf of their organizations!
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Global ARCH Member SPOTLIGHT | |
Congratulations to Brave Little Hearts Zimbabwe founder Tendai Moyo who was awarded Charity Organization of the Year! Tendai says, "I have found a home with Global ARCH. You are my everyday heroes I look to for support and guidance. I was just an ordinary housewife without a clue how to articulate this vision and passion. Global ARCH gave me the voice and the drive to see it through." | |
Ntambi George Salongo of Action for Disadvantaged People in Uganda distinguished himself and his organization by being awarded the Rotary Club of Kampala Kawempe Vocational Service Excellence Award for "Extraordinary service and dedication to humanity". You are an inspiration! | |
Voices of NCDI Poverty Advocacy Fellow Anu Gomanju, Global ARCH member and founder of Connecting Hearts to End Heartbreak (CHEER Hearts), was featured in an outstanding video about living with RHD in Bhaktapur, Nepal. She has shared her experiences as a person living with a non-communicable disease (NCD), and draws attention to the needs of broader communities of people living with severe, chronic NCDs at the World Health Assembly and the World Heart Summit. Please click on the video to watch. | |
More congratulations to Belen Blanton Altuve, founder of Fundacion Estrellita de Belen, and Tendai Moyo of Brave Little Hearts Zimbabwe, for becoming the first Global ARCH member organizations to be accepted as World Heart Federation members. A huge achievement!
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Most of our CHD member organizations celebrated CHD Awareness Week (February 7-14). Here are just a few mentions. | |
Pakistan Children's Heart Foundation's Mehwish Mukhtar and Farhan Ahmad participated in a live TV show to raise awareness of CHD.
They were also invited to various company events to speak about CHD and the role their new hospital will play in the lives of patients and families.
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The Canadian Congenital Heart Alliance were successful in having several Canadian cities publicly proclaim the important role that CCHA plays in raising awareness, education, research, and support of CHD. They were also successful in getting many cities to light their municipal buildings red for CHD Awareness Week (above is Toronto's CN Tower). | |
Brave Little Hearts Namibia once again rose to the challenge of engaging their local CHD community to sign our Declaration of Rights. A big thank you to Lavinia Ndemutila Ndinangoye and her team in Namibia, and Belen Blanton Altuve's Venezuelan foundation, as well as her invaluable social media contribution. If you haven't signed the Declaration please click on the link and add your name. | |
Below is an excellent interview with Dr. Krishna Kumar explaining many of the challenges that face families with children with CHD. You can find more excellent resources on our website. | |
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 member organizations please click HERE.
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