Aug 31st 2017 - Fundraising star – Mandy Harbin
Thank you to fundraising star Mandy Harbin who has helped CHF by fund raising in memory of her daughter who had a heart condition.
29/08/17 - Sharing the congenital heart disease (CHD) story
Find out more about the Children’s Heart Federation’s (CHF’s) personal stories of congenital heart disease (CHD). These are the inspiring stories of our heart children and families that motivate CHF constantly. Help us grow the CHD awareness story and extend information and support to all heart children and families. Further information: http://www.chfed.org.uk/category/your-stories/
21/08/17 - Cardiac risk in the young Surgery Supporters Club
CHF partner group Cardiac Risk in the Young (CRY) has just launched the CRY Surgery Supporters Club for young people who have had, or are about to confront, potentially lifesaving surgery of implantation of a defibrillator, pacemaker, or ablation and want to talk to others who have been through a similar experience. Find out more […]
07/08/17 - Young cardiomyopathy information and support
Are you a young person diagnosed with cardiomyopathy? CHF partner group Cardiomyopathy UK has services for children, young people and younger-adults (CYP&YA). These include peer support volunteers and the CYP&YA Panel. Further information: http://www.cardiomyopathy.org/young-people/children-young-people-and-young-adults
31/07/17 - How a Molly’s dolly can help
CHF have found that parents and carers often find it an understandable challenge to explain a forthcoming congenital heart disease (CHD) surgery to their heart children. CHF’s Molly’s dollies can help to bring a visual and tangible link to this conversation. Molly’s dollies are a rag doll that can be personalised for each child’s unique […]
24/07/17 - CHF’s signposts and CHD answers
Whether you have questions about: transition information; education, health and care needs (EHC) assessments; disability discrimination; or home to school transport; you can find answers to these from CHF’s information service as well as our signposts page to organisations including IPSEA, Independent Parental Special Education Advice. Further information CHF’s signpost page: http://www.chfed.org.uk/how-we-help/other-organisations/ Further information IPSEA: https://www.ipsea.org.uk/
18/07/17 - CHD Information Service via Factsheets
Did you know the Children’s Heart Federation (CHF) offers an information service including factsheet sets about heart conditions and caring for heart children that are free to download and share? Further information: http://www.chfed.org.uk/how-we-help/information-service/
18/07/17 - CHD & Neurodevelopmental Outcomes
Research cited in ‘The Journal of Pediatrics’ addresses ‘Neurodevelopmental Outcome in Children after Fetal Cardiac Intervention for Aortic Stenosis with Evolving Hypoplastic Left Heart Syndrome.’ Further information: http://www.sciencedirect.com/science/article/pii/S0022347617301440 CHF’s Factsheet on Aortic Stenosis. Further information: http://www.chfed.org.uk/how-we-help/information-service/heart-conditions/aortic-stenosis/ CHF’s Factsheet on Hypoplastic Left Heart Syndrome. Further information: http://www.chfed.org.uk/how-we-help/information-service/heart-conditions/hypoplastic-left-heart-syndrome-hlhs/
Jul 18th 2017 - Response from CHF to the proposals from NHS England to implement the standards for congenital heart disease (CHD) services for children and adults in England
1. The capacity in which we are responding CHF is a national CHD patient/parent led organisation that represents patients with all forms of CHD and their carers. We have taken account of the views expressed by both our partner organisations and by individual parents and carers. 2. Our response to NHS England’s proposal that in […]
17/07/17 - NHS CHD Consultation Final Day
Monday 17 July 2017 is the last day of the NHS Congenital Heart Disease (CHD) Consultation. Please respond on this final day if you’ve not already done so, to make sure your point of view is part of the CHD conversation. Young people with congenital heart disease views are important for inclusion as well as grown […]
