MAPPING GENETIC HEART DISEASES

PLN. Our heart muscle disease belongs to the group of rare heart diseases that can have serious consequences for over thousands of gene carriers in the Netherlands and abroad. As a patient, you are looking for the best possible care, an accurate diagnosis and the proper treatment in the process of your PLN-disease.

In the interest of cardiac patients

This is what the European Commission wants to achieve in the next couple of years by engaging “European Reference Networks”, or ERNs, consisting of 24 thematic platforms. The so-called “GUARD-HEART” ** is the only ERN that will be focusing, together with 24 healthcare centers from 12 European countries, on genetic, rare and complex heart diseases.

The more cardiac patients are being brought together, the better scientific research projects can be conducted. This unique collaboration within ERNs shall facilitate the bundling of knowledge and expertise from which all patients will benefit eventually by means of new innovative healthcare models, e-health tools and medical appliances.

** GUARD-HEART: Gateway to Uncommon And Rare Diseases of the Heart

Prof. A. Wilde (AMC Amsterdam, the Netherlands)

Dr A. Wilde, Professor Cardiology at the AMC (Amsterdam) and also ERN-coordinator of the GUARD-HEART study group says: “… at the moment, 3 groups of medical conditions have been included: electrical heart diseases (Italy), cardiomyopathies (France) and rare heart diseases and special procedures for children (Spain). As coordinator of this ERN, I will manage this GUARD-HEART ERN from the AMC…”.

medical conditions groups on the EU map

EU map: participating healthcare centers will be expanded.

Organizational objectives

Dr A. Wilde tells in an interview with our PLN Foundation about the aim of the international GUARD-HEART platform: “… 7 organizational objectives have been defined in the GUARD-HEART program for the next 5 years, as basis for work activities:

check mark blueEstablishing, reinforcing and expanding the network;

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Merging knowledge and expertise in order to improve the healthcare based on outcomes of available scientific research;

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Improving the quality of safety and healthcare services;

check mark blueGuaranteeing the accessibility to healthcare services;

check mark blueStimulating scientific research and innovation, both in diagnosis and during the treatment;

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Fostering transparency in the delivery of healthcare through a (global) strategy communication;

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The patient and his/her family are the focal points in the network service.

Dr A. Wilde about this EU project

Making the difference

These ERNs will stimulate scientific research through extensive clinical trials, hopefully resulting in the development of new drugs for example. Making such change has been one of the aims of our PLN Foundation for a long time and we support this initiative of the European Commission for 100%!

 

Would you like to know more about this EU-project after reading this article? Please check the website of the European Commission.

 

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