Since 2000 and the adoption of EC regulation No. 141/2000 on orphan medicinal products, the European Union has been helping to make rare diseases a public health priority, which is essential in fully taking into account the needs of close to 30 million citizens in the EU.
The challenge for Europe is to build permanent tools or mechanisms in order to sustainably account for the specificities of rare diseases on the scientific, economic and organisational levels.
In Article 12, Directive 2011/24/EU on the application of patients' rights in cross-border healthcare sets up enhanced collaboration between member states and defines the objectives of future European Reference Networks.
EUROPEAN REFERENCE NETWORKS (ERN)
In December 2016, 24 European Reference Networks, including the ERNICA network (European Reference Network on Rare Inherited and Congenital Anomalies) covering the same diseases and disorders as those of the FIMATHO network, were officially approved by the European Commission.
The European Commission created a poster on the European Reference Networks (ERN), with the purpose of explaining their role and their involvement in treating rare diseases.
THE ERNICA NETWORK
ERNICA (European Reference Network on Rare Inherited and Congenital Anomalies) is a European reference network dedicated to congenital abdominal and thoracic diseases and disorders.
It brings together the expertise of several European countries and is coordinated by Prof. Wijnen (Erasmus Medisch Centrum - Rotterdam).
All reference centres in the FIMATHO network became part of it, following a call for projects launched in 2016. FIMATHO has provided its strategic and methodological support in putting together candidate files.
The launch meeting of the ERNICA network took place in Rotterdam in April 2017. On that occasion, working groups were defined and implemented.
Five members of FIMATHO head up such working groups:
- Prof. F. Gottrand, coordinator of the CRACMO reference centre, co-leads the "Congenital malformations and diseases of the oesophagus" workstream and the "Capacity building and training" work package;
- Prof. J.-P. Hugot, coordinator of the MaRDi reference centre, co-leads the "Intestinal diseases” workstream;
- Prof. O. Goulet, coordinator of the MaRDi constitutive reference centre, co-leads the "Intestinal failure" workstream;
- Prof. L. Storme, coordinator of the Diaphragmatic Hernia reference centre, leads the "Research” work package;
- Prof. A. Benachi, coordinator of the Diaphragmatic Hernia constitutive reference centre, co-leads the "Fetal Medicine” work package with Jan Deprest.
Third meeting of the ERNICA network in Padua (Italy) - April 2019
The third annual ERNICA meeting was held in Padua in Italy from 11 to 13 April 2019. The creation of a scientific council on Research helped give thought to registers and databases, care pathways and ERNICA consensus. Theme-based work days were planned.
The fourth annual ERNICA meeting will take place in Lille
The annual meeting should have been held on 23 and April 24 2020; however, due to the current health crisis, it has been postponed to Spring 2021.