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20 Aug 2018

20/08/18 - Childhood experiences of congenital heart disease (CHD)

International research is addressing childhood experiences of congenital heart disease (CHD) and their lifelong reverberations. An international study has used individualised narrative analysis by adults with complex CHD to learn more about their skills set in navigating life with CHD. Further information:

17 Aug 2018

13/08/18 - Study explores potential for new diagnostic test for Kawasaki Disease (KD)

Researchers have identified a unique genetic pattern in children with Kawasaki Disease (KD) which could offer the basis for a new diagnostic test. The study reveals for the first time the specific pattern of genes switched on or off in the early stages of KD. KD is an inflammatory condition which is currently the most […]

27 Jul 2018

26/07/18 - CHF say a big thank you to Persimmon Homes Essex

The Children’s Heart Federation (CHF) send a big thank you to Persimmon Homes Essex for their significant donation to CHF’s Molly’s Dollies initiative. This means 40 bespoke Molly’s Dollies rag dolls with personalised congenital heart disease scarring will now be able to accompany 40 children with congenital heart disease (CHD) on their CHD journey. From […]

26 Jul 2018

23/07/18 - CHF’s informational resource for children with SVT

A very fast heart rate is called tachycardia. In children the most common kind of tachycardia is supraventricular tachycardia – SVT for short. Supraventricular Tachycardia (SVT) in children can be present at (or even before) birth. Further information from CHF’s information sheet:

20 Jul 2018

16/07/18 - Fact sheet on Attendance

Children with medical conditions should not be penalised if they are unable to come to school because of their medical condition. If you are facing problems, this fact sheet explains: what support is in place and what your rights are. Further information:

13 Jul 2018

13/07/18 - Kawasaki Disease: The most common acquired heart disease in infants and toddlers

Researchers from the UK and Germany have published a study addressing Kawasaki Disease (KD). KD is the most common acquired heart disease that mostly affects infants and toddlers. ‘Delayed diagnosis and treatment results in coronary artery aneurysms in up to 25% of all affected individuals.’ Link to study: Further information from CHF’s Kawasaki Disease […]

13 Jul 2018

09/07/18 - Organ donation & transplantation

NHS Blood and Transplant’s Organ Donation and Transplantation Activity Report for 2017/2018 includes the following key figures: The consent rate for deceased donation has reached a record high, with 65.5% of families agreeing to support the donation of a relative’s organs. The number of deceased donors reached a record high of 1574 an 11% increase […]

06 Jul 2018

06/07/18 - Young adults with congenital heart disease and driving

Did you know that you must tell the Driver and Vehicle Licensing Agency (DVLA) if you have congenital heart disease and have symptoms that affect safe driving? Further information:

05 Jul 2018

02/07/18 - Let’s hear it for CHF’s fundraising stars!

Your fantastic efforts and support of CHF’s work is helping CHF provide more congenital heart disease (CHD) resources for heart children and their families as well as raising much needed congenital heart disease awareness to new communities. New month, new week, same outstanding motivation. Further information:

29 Jun 2018

25/06/18 - International research and Fontan patients

An international research study asks: Can endurance training improve physical capacity and quality of life in young Fontan patients? Further information:

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