Children’s Heart Federation on behalf of ECHDO
The LENA Team in London
Information and Research Manager
The European Congenital Heart Disease Organisation (ECHDO) works for Congenital Heart Disease (CHD) patients of all ages across Europe and has members from more than 20 European countries. The Children’s Heart Federation (CHFED) in London, UK, is one of the national patient organisations in ECHDO. As increasing numbers of children suffering from congenital heart diseases survive into adulthood, ECHDO members like the Children’s Heart Federation include both support groups comprised of parents with children suffering from CHD and support organisations with a focus on adults with congenital heart disease.
As an ECHDO member, the Children’s Heart Federation has a wealth of experience and work for CHD patients of all ages, sharing information and experiences on treatments and supporting and organising events for both patients and caregivers. They work together to raise awareness and understanding of CHD and collaborate on a number of research programmes.
They have previously worked with multiple national patient support groups on the EU-funded Corience Project. This pan-European website is dedicated to congenital heart defects (CHD) and provides in-depth information and advice on how to make life with CHD easier for patients, parents, doctors, and scientists.
In the LENA project, the Children’s Heart Federation help steer the entire project from the patient/parent perspective through presentations at meetings for clinicians, patients/parents and caregivers, through training of lay-experts from participating countries on issues relevant to LENA to help them provide accurate country-specific information, and through publication of information on relevant topics. CHFED members Anne Keatley-Clarke, Samana Schwank, and Rohini Simbodyal work with the media and with the scientific community to raise awareness of the LENA project.
The Children’s Heart Federation takes the lead in work package 11 focusing on Ethics & Dissemination to Parents, Patients, and Society by communicating with patients and their parents or caregivers and will disseminate information on ethics, consent and other matters relevant to the LENA project in easily understood language using approved websites and the social media.