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Children’s Heart Federation on behalf of ECHDO

 

Anne Keatley-Clarke

Children's Heart Federation

Anne Keatley-Clarke

 

Chief Executive

 

E-Mail

Children's Heart Federation

 

Great Eastern Street 2-4

EC2A 3NW London

United Kingdom

 

Website

 

 

 

The LENA Team in London

Marta Salamonowicz

  

Information and Research Manager

 

E-Mail

 

 

 

 

 

 

 

 

About Us

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.

LENA Team

LENA Team

LENA work packages

LENA work packages

Quicklinks to our LENA collaborations and contributions

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The last LENA general assembly meeting took place in Vienna 11 -13 October 2016! Read more

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