News
29/08/18 - Organ Donation Awareness Week 2018
Family support is needed for an organ donation to take place. This year’s Organ Donation Awareness Week takes place from 03 – 09 September 2018 Its core theme is: Words Save Lives. Let’s speak with our families to clarify our wishes. Words save lives. Actions complete them. Further information: https://bit.ly/2PNYPTj
28/08/18 - Congenital heart disease and the role of coping
Researchers are addressing executive function and internalizing symptoms in adolescents and young adults with congenital heart disease, especially focusing on the role of coping. Further information: https://bit.ly/2whknzS
24/08/18 - Brexit no deal technical notices and DHSC letter
As you may be aware, the Government has today published its first tranche of 24 notices in relation to a no deal Brexit scenario and supporting guidance, with a further 60 documents due to be published in the coming weeks. A summary of the relevant guidance is included below. (It’s worth noting that the EU has […]
Aug 23rd 2018 - The inspiration for Molly’s Dollies goes on to inspire others with GCSE success
Molly was born on 15 December 2001 with Truncus Arteriosus type one with a ventricular septal defect (VSD) and an atrial septal defect (ASD), she had open heart surgery at three weeks old in January 2002. When Molly got older around the time she was about to start primary school, she began to question her […]
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: https://bit.ly/2nOK9GK
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 […]
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 […]
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: http://www.chfed.org.uk/how-we-help/information-service/heart-conditions/supraventricular-tachycardia-svt/
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: https://bit.ly/2zJCnqw
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: https://bit.ly/2LdVHka Further information from CHF’s Kawasaki Disease […]
