Member Spotlight

On May 21, Menudos Corazones Foundation organized the “Day for the Visibility” to recognize the rights of people with congenital heart disease and their families, at the Congress of Deputies in Madrid, Spain. At the event they launched “Menudos Corazones – Decalogue for patients with congenital heart disease and their families”, with the following 10 goals…

I was diagnosed with rheumatic heart disease in 2001 when I was 11 years old. After a bout of tonsillitis, I started to experience symptoms of rheumatic fever. The sore throat from the tonsillitis turned to chest pain, joint pain, chronic fatigue, shortness of breath, increased heart rate, and swollen hands and feet.  I developed…

Tendai Moyo, founder of Brave Little Hearts Zimbabwe, is an active member the Global ARCH Board of Directors. She joined to help raise awareness about congenital heart disease (CHD) and the devastating impact it can have on families struggling to find lifesaving medical care for their babies with CHD. A race against time to save…

Brave Little Hearts South Africa (BLHSA) is a support and advocacy group for parents of children with congenital heart disease (CHD). BLHSA strives to raise awareness of CHD by facilitating and implementing support programmes for families with CHD, and advocacy by creating platforms in the medical field for engagement concerning critical CHD matters. BLHSA also…

What is the main goal of the Ollie Hinkle Heart Foundation? OHHF’s central goal focuses on the Take Heart Initiative to cultivate an equitable standard of care that centers the voices of every person and family affected by childhood onset heart disease in collaboration with clinicians and health systems by empowering and educating caregivers, building…

One year ago, Global ARCH lost a guiding light. Noemi de Stoutz was a trailblazer and dedicated champion of CHD advocacy and support. Born in Switzerland with complex CHD, Noemi survived far beyond expectations. Despite her limitations, she spent her life helping others as a palliative oncology physician. She was forced to retire early due…

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…

This webinar highlights the global burden of disease for congenital and rheumatic heart disease and the challenge of accessing treatment in low- and middle-income countries. It also introduces the Call to Action campaign, which will be introduced at the 8th World Congress of Pediatric Cardiology & Cardiac Surgery (WCPCCS) in August, 2023. The webinar presenters…

Rheumatic Heart Disease Philippines was founded in 2017 because of my wife who has RHD. 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…

CHD Awareness Day recap Every February 7-14 patient and family advocates around the world participate in Congenital Heart Disease (CHD) Awareness Week. It is a time to raise awareness of CHD in their local communities. Global ARCH and Children’s HeartLink are two leading childhood-onset heart disease advocacy organizations that work to improve lifelong outcomes worldwide. What…

1. What would you suggest to parents of CHD children when it comes to building resiliency so that mental health issues can be addressed early? I’d like to first say that I have a great deal of respect for parents and caregivers of children with CHD – I recognize how stressful their own experiences can…

In early June Brave Little Hearts Zimbabwe participated in our National Youth Business Expo, as we are looking at establishing sustainable projects to help empower our communities to attain financial freedom. This is so important because donors are hard to come by, and the financial burden of heart communities is so huge. Our target is…

I’m Belen Blanton, President of Estrellita de Belen Foundation. I was born with a congenital heart defect called tricuspid atresia causing me to now suffer from Eisenmenger Syndrome.  I now dedicate my life to fight for children with congenital heart defects in my country of Venezuela. The situation in my country has more than 4,000…

It was through the journey and loss of my Brave Little Girl, Rudo, in 2018, that birthed Brave Little Hearts Zimbabwe. It began by me seeking justice on the treatment we encountered at the hospital that resulted in the negligent loss of my child’s life, and to honour the good fight that our Brave Little…

Comparable to the condition when wind blows and we get random thoughts, alike human emotions are effected by outer elements.  The stigmas of society some way disturb us; moving us away from our own planned paths. Though life is full of uncertainties, we still believe we are best in making decisions. Ignoring the fact that…

This Congenital Heart Awareness Week (February 7-14) I’m “celebrating” from my bed in a downtown Toronto hospital. I’ve been here too many times in the past 11 months, since just before we had the first COVID-19 lockdown. My heart defect, called tetralogy of Fallot, started causing my heart to beat so fast that it feels like I have…