North East & North Cumbria Congenital Heart Disease Network

22/04/2026

As the team from Poppy’s Light Foundation set off on an amazing adventure we wish them the very best of luck. While this will be a fantastic, and challenging, experience the team are doing this to raise awareness of inherited cardiac conditions (ICCs).

ICCs are a group of genetic heart disorders which can be passed down through families, affecting approximately 1 in 250 people and can impact individuals of all ages.

Poppy's Light Foundation raises funds to support education and empowerment, psychological support and are an advocate for cardiac screening in young people.

You can help with this particular challenge here https://tinyurl.com/43mevm7f

Find out more about this amazing charity here https://www.poppyslightfoundation.com/

Best of luck 👏 🏔️ 🧡

April 2026 see's our intrepid explorers take off for another hiking challenge! This year, our team, led by Poppy's Dad Peter Eagle, and brother Oliver Eagle, includes fellow previous Kilimanjaro hiker

20/04/2026

Summer camp trip – Ireland 10th – 17th July 2026
Are you a young person aged 14 – 17 born with a heart condition? Are you interested in meeting other young people at a residential summer camp trip in Ireland?

The Somerville Foundation have a limited number of places to their young members for this amazing opportunity to enjoy peer support, outdoor activities and challenges.

Are you a young person aged 14 – 17* born with a heart condition? Are you interested in meeting other young people at a residential summer camp trip in Ireland?

14/04/2026

We wanted to share some resources with you if you or a family member have congenital heart disease, or you care for patients with congenital heart disease.

Two of our patients, Mark and Sasha, have shared their story of living with the life long condition that is congenital heart disease.

Dr Tayo Adesokan, our paediatric clinical lead, from the Freeman Hospital has also shared a video explaining congenital heart disease, who cares for CHD patients and the role of the network.

You can find them at https://tinyurl.com/csv8btr9

Thank you Sasha, Mark and Tayo for your time and support in sharing your experience.

We would also like to thank Harry Newhouse from the NENC Provider Collaborative for all your support in producing these videos

Del dine videoer med venner, familie og verden

11/04/2026

So that was a bit blowy 😨

Big thank you to everyone who donated to these wonderful charities, they do so much to help children across the North East and beyond

https://tinyurl.com/ym2xjbev

CHUF
The Great North Children’s Hospital Fund (GNCH Fund) Newcastle Hospitals Charity

11/04/2026

Well the day has arrived!!

Today our network manager Terry Phillips, and her husband, will be abseiling off the roof of the The Great North Children’s Hospital (GNCH) at the RVI, Newcastle.

They are supporting the great work of 2 local charities, CHUF and The Great North Children’s Hospital Fund (GNCH Fund), part of Newcastle Hospitals Charity.

The network have worked alongside and have been supported by Chuf since Terry came into post over 6 years ago and we continue to be inspired and humbled by the wonderful work they support. From home monitoring kits, cuddle chairs, physical activity support, chair beds, food vouchers and washbags to sim baby 'Nelle', OCS™ HEART (Organ Care System), VAD buggies and 3D imaging systems. The list is endless as is their ability to innovate and think outside the box to provide holistic care for heart patients of all ages and their families.

The work charities like these provide to NHS services is invaluable, help us to help them continue.

We appreciate times are difficult and every penny counts but if you can spare a few you can donate here https://lnkd.in/e3NztVwn.

Thank you

🙏 ❤️

16/03/2026

On Saturday night we had the great privilege of attending the charity ball for Poppy’s Light Foundation at Beamish Hall. A great evening honouring a wonderful young woman who sadly passed away unexpectedly due to CPVT, and the clinical team who continue to care for other children with inherited cardiac conditions.

The charity does amazing work in raising awareness of Inherited Cardiac Conditions (ICC) and Sudden Arrhythmic Death Syndrome (SADS). They have recently launched their peer support programme and social prescribing network, alongside psychological and specialist mental health partners across Newcastle, Teesside and Carlisle.

The charity are working alongside healthcare professionals to;
• Strengthening recognition of ICC red flags across frontline services
• Support for sudden death spleen sampling mandates, working alongside police and coronial services
• Continued dialogue around inherited cardiac conditions being considered within the newborn blood spot screening pathway

Visit their website to find out more about the amazing work they are do https://www.poppyslightfoundation.com/

-east-and-north-cumbria-nhs

13/03/2026

Children's Hearts UK - Residential summer camp trip to Ireland
10-17th July 2026
Register our interest by Friday 29th May
Contact info@chfed.org.uk

09/12/2025

https://www.eventbrite.co.uk/e/coffee-questions-your-money-toolkit-with-matthew-douglas-ltd-tickets

09/12/2025

https://chfed.org.uk/january-step-challenge/

09/12/2025

https://chfed.org.uk/team-childrens-hearts-uk-for-the-myway-london-marathon-2026/

08/12/2025

Do you have congenital heart disease or care for someone who does? If you are interested in improving physical activity please contact Karen 🙋‍♀️

☎️ 0191 2139740
📧Karen.Caulfield3@nhs.net

Working days: Monday - Wednesday