This profile is part of the Global ARCH Storytelling Series to celebrate our members, their personal stories, and the work they do to help others. I was a young mum and in a state of shock when I was told that my baby had a very major heart condition. It was a very tough journey, and I’ve cried...
This profile is part of the Global ARCH Storytelling Series to celebrate our members, their personal stories, and the work they do to help others. My wife, Roselle DG Estrella, is a 43-year-old hard-working woman. She has been working since she was 16 years old helping with farm work. When Roselle was a girl growing up on their family’s...
I believe that working together and building a common voice is the best way to create the change we need: equal access to affordable lifelong specialized heart care, mental health support, and social programs and policies addressing disability, discrimination, and equal access to education and employment....
I hope that training on rheumatic fever and rheumatic heart disease among health care providers improves so that it is as well recognized and treated as other health conditions. I also hope that we can get better information materials for community members and health workers, in different languages, in our healthcare facilities....
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...
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 "Rudo" In...
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 confidence...
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 to...
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...
Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world. Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.