That's all folks! 🙌
Thank you to our members for an incredible day, and a very special thank you to all the wonderful people that brought this day together. 💕
We could not have done it wiithout you.
Yesterday we had a great city tour, led by Beatrice and Marina of Cuore Matto. 💕
Thanks to our Swiss members for hosting the walk and our dinner last night (more photo's to follow soon).
Now our Annual Conference and General Meeting in session at University Children’s Hospital Zurich.
👋 We're in Zurich for the AEPC conference and our upcoming AGM.
Special shoutout to our Swiss members @cuorematto_schweiz who are hosting us this year. 💕
We are proud to welcome Katarina Stano as incoming President for 2026.
Her powerful combination of advocacy leadership, international perspective, and lived CHD experience will help drive our mission forward across Europe. 💕
👉 Read the full story here: echdo.eu/2026%20Presi...
Strength in Unity: Celebrating the Women of ECHDO 💜✨
On this International Women’s Day, we are pausing to say thank you.
The latest ECHDO Newsletter is out!
Read The ECHDO Beat – March 2026 here: sway.cloud.microsoft/YhCXnbXESw2E...
Follow us @echdoheart.
🤍🖤 The good stories we share are not always the norm.
Today, we light a candle for the heart warriors who lost their battles — & for the parents, families, and loved ones learning how to carry the deepest pain while moving through another day.
You are part of our community, always.
🕯️ Heart Angels
💕 Advocacy often carries a mother’s voice, but let’s not forget the fathers—the quiet anchors.
Watching my daughter fight through open-heart surgery with half a heart taught me never to give up. She went through hell and prevailed. It was worth every second.
#HeartMonth #CHD #Fatherhood
Parents of children with CHD often experience high levels of stress, anxiety, and emotional exhaustion. ❤️🩹 Hospital stays, surgeries, & uncertainty can leave lasting psychological impacts — sometimes described as PTSD-like responses.
👉 Parents are even called “hidden patients” in medical research.
Growing up with congenital heart disease also means learning how , & when to talk about your heart outside the hospital.
Dating. First love. Intimacy. Body image. Sex. Periods. Fertility. 💘 Conversations many young people already find difficult can feel even more complex with a lifelong condition.
🧑 Growing up with congenital heart disease means one day leaving the pediatric team that has known you since childhood.
Transition is learning to:
• understand your diagnosis
• manage medications
• ask questions and speak for yourself
• schedule appointments
• recognise symptoms worth checking
📢 Congenital heart disease is no longer only a pediatric condition.
Europe 🇪🇺 is now entering a new reality: the ageing-CHD era — a success story of medical progress, but also a call for action.
Living longer means new needs, survival was the first milestone.
Quality of life must be the next.
📢 Congenital heart disease is no longer only a pediatric condition, but a lifelong cardiovascular condition.
Europe is now entering a new reality: the ageing-CHD era, a success story of medical progress, but also a call for action.
Survival was the first milestone.
Quality of life must be the next.
👉 Living with CHD is no longer only about survival., but achieving the best life possible.
Not long ago, congenital heart disease was often considered incompatible with life.
Today, hanks to advances in surgery, cardiology, & lifelong care, most children born with CHD grow well into adulthood.
❤️🩹 For many people living with congenital heart disease, questions about pregnancy and parenthood come with extra considerations.
With specialised care and planning, many can safely become parents — but decisions often require careful medical guidance and emotional support. 🌻
Image created with AI
🥳 Thanks to medical progress, most children born with congenital heart disease today grow into adulthood.
t also means learning to navigate healthcare on your own.
And growing up with it is not only about survival — it’s about learning how to live. 💝
From early surgeries and hospital stays to uncertainty about the future, many people living with congenital heart disease (CHD) carry invisible experiences that shape mental health across a lifetime. 🌻
Children & adults with CHD are also more likely to experience ADHD compared to their peers. 💝
🤔 Can people with congenital heart disease exercise?
Yes! But not always in the same way.
For many people living with CHD, it can be one of the best ways to support circulation, strength, and overall wellbeing. 🔁
💝 People living with congenital heart disease study, build careers, raise families, and contribute to society every day.
But... Work may come with invisible challenges: fatigue, regular medical follow-ups, recovery periods, or limits others may not see or fully understand. 💕
❤️🩹 For many children living with congenital heart disease, school can look a little different.
📷 today’s photo: Emanuela (8), living her best life while growing up with a single-ventricle heart. Follow her journey at @katarina_stano | IG
#EveryBeatMatters #CHDAwareness #HeartMonth #CHDinSCHOOL
❤️🩹 In up to 50% of cases, there is no clearly identified cause of congenital heart defects.
It’s not the food you ate.
Not a step you missed.
Nor a step you took.
You're not alone. ♥️
#EveryBeatMatters #CHDAwareness #HeartMonth
👉 This is us. This is our mission.
CHD is not something you outgrow — it’s a lifelong condition, and care must reflect that. ❤️🩹 We advocate for better standards of medical and psychosocial care, access to safe medicines, and equal treatment across Europe. We are ECHDO. 🇪🇺
✨️ MEMBER SPOTLIGHT ✨️
CUORE MATTO (Switzerland)
Cuore Matto [Crazy Heart] — a support association for young people and adults with congenital heart disease in Switzerland — has been building connection, knowledge, and community since 1999. 💕
✨️ MEMBER SPOTLIGHT ✨️
Veliko srce malom srcu [Big Heart to a Small Heart] is one of the oldest CHD organisations in Croatia, founded in 1994 and built by doctors, healthcare professionals, and parents walking this journey together. 💕
✨️ MEMBER SPOTLIGHT ✨️
@ssrcemzasrcke (Slovenia)
S srcem za srčke [From the heart for little hearts] is one of ECHDO’s newest members - welcome! 🤗
In Slovenia, around 12 babies are born each month with a congenital heart defect, and 80–100 children need heart surgery every year.💕
Mental and physical health have never been separate for me. At 65, my journey is still ongoing. But so is my strength. 💗
Read Magda's full story here: Https://echdo.eu/content/madgas-story
30 weeks pregnant I learned my daughter had a congenital heart defect. We had 10 weeks to prepare. After birth she was rushed into care and we travelled abroad for treatment. A month of midnight calls & hospital goodbyes. She’s stronger than I’ve ever known. 💛
Full story👇
echdo.eu/content/maty...
🔊 Today, we kick off the Congenital Heart Disease Awareness Week. #HeartWeek
A week to speak louder about lifelong care, equity, and support.
♥️
🔖Tag us in your posts or use #ECHDO, and we’ll do our best to reshare.
#EveryBeatMatters
#CHDAwareness #advocacy
❤️🩹 That first surgery is one of the hardest moments a parent can face. You prepare for appointments, but not for walking your tiny baby into a surgical ward.
Resilience isn’t the absence of fear — it’s standing anyway.
These surgeries save lives. ♥️
#EveryBeatMatters #CHDAwareness #HeartMonth
