ECHDO

👉 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

Living with CHD has taught me this: mental and physical health are not separate. When life changes the balance, you have to find a new one. Read Annabel's full story here: echdo.eu/content/chd

❤️‍🩹 There are many different types of CHD — from small holes in the heart, to more complex conditions.

Some children with CHD need regular check-ups, medication, and one or more heart surgeries. 🏥 Others may grow up feeling almost no limits at all — but still need lifelong follow-up.

📢 Did you know congenital heart disease (CHD) is the most common birth defect, affecting about 1 in 100 babies?
In Europe alone, experts estimate more than 2.3 million adults are living with CHD. In the EU, an older but widely cited estimate suggests around 36,000 babies are born each year with CHD.

♥️ Did you know February is recognised around the world as Heart Month?

For the congenital heart disease community, it’s a time to raise awareness about conditions people are born with — not caused by lifestyle — and that often require lifelong care.

Tag and share your stories with us.

🔔 MEMBER ALERT 🔔
Scam emails are circulating claiming to be from ECHDO or our President.

Official messages only come from ECHDO info or president email addresses.
We will never ask for money outside annual membership fees (always invoiced).

Please check your inbox for official comms.

CHD knows no borders — and neither should our voices.
We’re inviting patients, families, volunteers, and organisations to join a shared ECHDO video for #CHDAwareness.

Instructions have been sent by email. If you’ve received the message, we’d love to hear from you. 💗

#EveryBeatMatters

Sharing key events coming up for ECHDO over the next few months.
February is Congenital Heart Defect Awareness Month, so keep an eye out for our campaign launching soon. 🩷

These moments reflect what matters to us as a community: advocacy, learning, and collaboration.✨

Seasons greetings from the ECHDO board. 🐧
Wishing our members, friends and supporters around the world a prosperous 2026. ✨️

🌟 𝗔𝗽𝗽𝗿𝗲𝗰𝗶𝗮𝘁𝗶𝗼𝗻 𝗣𝗼𝘀𝘁🌟
We would like to express our sincere gratitude to White & Case LLP for their many years of generous pro bono strategic legal support and advice to ECDHO.

Thank you, 𝗪𝗵𝗶𝘁𝗲 & 𝗖𝗮𝘀𝗲, for standing with us and strengthening our mission year after year. 🙏💙

📍𝘞𝘩𝘪𝘵𝘦 & 𝘊𝘢𝘴𝘦 𝘓𝘓𝘗 𝘉𝘳𝘶𝘴𝘴𝘦𝘭𝘴

Our President Karen Tomlin’s story was selected for the EACH Summit exhibition 💙❤️

Her message: pulse oximetry for all newborns saves lives.
We stand with families and call for universal screening across Europe.

#ECHDO #EACHSummit #CHDawareness #PulseOxSavesLives

@europeansocietyofcardiology

We are delighted to share that Katja Laine has been awarded the Cross of Merit of the White Rose of Finland. 💓
Congratulations, Katja — and thank you for your unwavering commitment to the CHD community. ❤️💙

🔔 MEMBER ALERT - ONLINE MEMBERS MEETING 📅

When: 8 December 2025 | 19:30 CET
Join us for a festive social catch-up and some online fun ahead of the holiday season! If you didn't receive the link sent via email, please get in touch with info@echdo.eu. 💓

Introducing The ECHDO Beat! 🥁
Our new bimonthly newsletter is here to connect the CHD community across Europe. Get the first edition for:

Member updates 💙
Advocacy highlights 📢
Future plans 🌍

Read the inaugural issue! 👇
sway.cloud.microsoft/pC6ISSIgOzIe...

#ECHDO #CHD #HeartDisease #Newsletter

ECHDO is entering a new chapter, having elected a new Board at it's General Assembly in Croatia earlier this year, with Karen Tomlin (UK) as the new President.

🔗 Read the full article on the ECHDO website. (Link in BIO)
www.echdo.eu/content/echd...

🔔 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 𝗥𝗲𝗺𝗶𝗻𝗱𝗲𝗿: Tonight 30 Sept 19:00 CET with Psychologist & Systemic Psychotherapist Andri Christoudia - “From Fetus to Adulthood in CHD: How My Journey Defined My Vision to Empower CHD Children and Their Families".

👉🏼 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 𝘁𝗲𝗮𝗺𝘀 𝗹𝗶𝗻𝗸 - 𝘰𝘱𝘦𝘯 𝘵𝘰 𝘈𝘓𝘓 tinyurl.com/5774bfkw

We're here for you, always. 💗

Living with a heart condition isn’t just about big milestones. It’s about the small victories: a good walk, a laugh with friends, a day that feels “normal.” Those moments are everything. 💛

#CHD #WorldHeartDay #CHDAwareness

To everyone managing medication, lifestyle changes, hospital visits, and the mental load that comes with a heart condition: we see you. We’re in your corner, always.

#WorldHeartDay #CHD #CHDAwareness

Our Charity Consultant, Charlotte Kearsey on compassion. 💛

Our Vice President, Mirela Dežman on the support in the CHD Community. 💞

A quote from ECHDO President, Karen Tomlin, on World Heart Day. 💞