Children's Heart Federation

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Children's Heart Federation

The leading national charity championing children with heart conditions.

03/11/2026

Our next Young Person Steering Group Drop-In is coming up and we’d love for you to join us! 💙

Whether you’ve joined us before or this is your first time, come along to:

💬 Ask questions
🫶 Share your experiences
💡 Have your say
❤️ Help shape what we do at Children’s Hearts UK

No awkward introductions. No pressure. No commitment.

📅 Wednesday 25th November
🕢 7:30pm
💻 Online (link in comments)
👥 Recommended for ages 14+

03/11/2026

❤️ Could your experience help shape the future of newborn screening?

The University of Bristol is inviting parents to share their experiences and views as part of a research project exploring the use of pulse oximetry in routine newborn screening across the UK.

The research team is looking for a small group of parents to take part in a face-to-face discussion meeting in Bristol on 17 November 2026.

They are particularly keen to hear from parents of babies born within the past year (or slightly earlier), including:

❤️ Parents whose baby had a health condition, such as a heart problem, identified through pulse oximetry screening.

❤️ Parents whose baby has a health condition but did not have a pulse oximetry test at birth.

Your experiences, insights and perspectives are valuable. By sharing your story, you could help inform future decisions about newborn screening in the UK.

📍 Where: Bristol
📅 When: 17 November 2026

If you have relevant experience and would be interested in taking part, please get in touch by the end of this week (6th November) with the University of Bristol research team to find out more. (link in comments)

01/11/2026

❤️ Does your child have Supraventricular Tachycardia (SVT)?

Join us for Coffee & Questions and hear heart mum Naomi's honest experience of navigating SVT from diagnosis to treatment and everyday life.

☕ A relaxed space to listen, share and ask questions.

📅 Wednesday 18th November | ⏰ 7:00pm | 💻 Online

31/10/2026

🎃🦷 A Halloween reminder: Keep those little smiles healthy!

With all the Halloween treats and sweet surprises around, it's a great time to remember the importance of good dental health, particularly for children with heart conditions, as bacteria from the mouth can sometimes enter the bloodstream and increase the risk of infective endocarditis (an infection affecting the lining of the heart).

This Halloween, we're resharing a helpful video from the British Society of Paediatric Dentistry BSPD , created specifically to support families of children with congenital heart disease.

🦷 Oral Health Guide for Children Aged 0–9 Years with Congenital Heart Disease (CHD)

🎥 Watch the BSPD video on YouTube (link in comments)

29/10/2026

💙 Help shape the future of intensive care for young people

Children’s Hearts UK is supporting OPTICAL (Optimising Paediatric Transition to Intensive Care for Adults), a research study led by Great Ormond Street Hospital and University College London (UCL).

The study aims to understand the experiences of young people who have received care in a children’s intensive care unit and later needed, or may need, care in an adult intensive care unit.

Following our series of discussion meetings, there is now another opportunity to share experiences through an online discussion board.

🔗 Have your say. Link to both parents/carers and teenagers/young adult discussion boards in comments

27/10/2026

Our Young Person Steering Group Drop-In is happening tomorrow! 💙

Come and hang out with Aaliyah, ask questions, share your experiences, throw some ideas around and have your say on what we do at Children’s Hearts UK. 💬🙌

Never been before? Just come along, say hi and see what it’s all about. 👋

📅 Wednesday 28th October
🕢 7:30pm
💻 Online
👥 Ages 14+

25/10/2026

When life is focused on your child’s heart condition, it can be easy to put essential life admin to one side. ❤️🩹

That’s why we’re pleased to share our partnership with Well Financial, who provide clear, trustworthy and genuinely personal financial advice to help families feel more confident about their financial wellbeing. 💚

From understanding your options to planning for the future, having the right support can make navigating financial decisions feel a little easier.

Because looking after your family includes looking after your financial wellbeing too. 💗

23/10/2026

💗 Have You Sent Us Your Video Yet? 🎥

We’re looking for more amazing faces and voices to be part of our 1 in 100 project! ❤️

It’s simple, record a short video of yourself saying:

❤️ “I am 1 in 100.”

📩 Want to get involved?

Comment below, send us a DM, or email [email protected] with your video

21/10/2026

💗 Meet your host – Nicola

We’re delighted to introduce Nicola, who will be hosting our upcoming Coffee & Questions session especially for grandparents of children with heart conditions.

Nicola is a mum of four and a very proud grandma to four grandsons. Two of her grandsons, Harvey and George, were born with congenital heart disease, so she knows first-hand the highs, lows, questions and uncertainties that can come with supporting a child with a heart condition.

👵👴 Are you a grandparent of a child with a heart condition? Come along and meet Nicola and other heart grandparents.

📅 Wednesday 11th November
⏰ 7:30pm
💻 Online

Whether you’re newly navigating a heart diagnosis or have been on the journey for many years, everyone is welcome!

19/10/2026

❤️ MEET AALIYAH! ❤️

Aaliyah will be your host for our next Young Person Steering Group (YPSG) Drop-In! 👋

Come along, say hello, ask questions, share your experiences and chat about the things that matter to you. 💬

📅 Wednesday 28th October
🕢 7:30pm
💻 Online
👥 Ages 14+

Whether you’ve been before or it’s your first time, you’re very welcome! 🫶

Address

Suite 12, The Centre, Lakes Industrial Park
Braintree
CM73RU

Website

http://www.chfed.org.uk/

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