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NHS England are looking at how people are cared for if they have a heart probelm they are born with. They are looking at the whole journey from your parents finding out before your born - right through to adult services! A whole lifetime!!
There are likely to be some changes in the future as they want to create a first class service that can meet the needs of everyone.
It's really important that you know about this and know how to get involved and have your say.
You can email NHS England and tell them what is important to you
There will be some meetings later this year where you can all meet up together. You will get the oppurtunity to understand what they think should happen and to have your say
Keep watching this space for updates about meetings
Hearts4teens started back in 2005. We asked a group of young people from across the North West of England and North Wales who were growing up with a heart condition what information, help and support they needed. They came up with the idea of setting up a support group. We now have the following services set up to support young people: All of these services are run by the Adult Congenital Heart Nurse Specialists based at Manchester Royal Infirmary. They can be accessed by anyone growing up with a heart problem regardless of where they live or which hospital they attend.
Be Inspired and watch this video of Shaun White - Snowboarding Champion - who just happens to have Tetralogy of Fallot