Rare diseases, green light to the new Campania regional plan (2023-2026), recently approved with a resolution of the council of Palazzo Santa Lucia in implementation of the national plan launched last November. The network of centers for the diagnosis and treatment of rare diseases has been revised, identifying the centers of excellence, reference and coordination on the territory that will have to certify their activity by January 2025.
The Campania region is among the first, along with Veneto, to accelerate the implementation of the national plan and thus consolidates its role in the European Networks for Rare Diseases (Ern).
"The new Campanian organization for rare diseases, with 12 regional hospitals and polyclinics as reference centers where 150 units of staff and 400 expert doctors are based, looks to Europe and the European care networks thanks to 22 centers of excellence recognized in 6 hospitals and universities of the Region".
So Giuseppe Limongelli, director of the Unit of rare and hereditary cardiovascular diseases of the Monaldi Hospital and since 2018 director of the coordination center for rare diseases of the Campania Region, intervened this morning at the palace of Health in Padua at the fourth edition of the Italian Assizes on rare diseases and the Ern European networks promoted at the Palace of Health in Padua by Motore Sanità.
Gathered here are Institutions, Patient Associations, representatives of the scientific world and Pharmaceutical Companies: A central event to trace the point on health policies in the field of rare diseases sponsored by the Padua University Hospital, the University of Padua and the non-conditioning contribution of Chiesi, R&I Genetics, BoheringerIngheleim, Mirum, Kiowa Kirin and Takeda.
Italy is the leader of the European reference networks for rare diseases and Campania is the leader among the southern regions: under the lens are the organizational aspects of the Ern networks and those of the regional networks within the assistance offers of the Italian health service.
"The Ern centers - added Limongelli - are already actively part of the national system, so from a structural point of view the network is already up and running but now it is necessary to pool competencies, clinical and assistance data for all Italian rare disease centers also involving departments that are not in the Ern networks but part of the regional rare disease networks".
"The Rare Disease Networks are a tool of aggregation for the European Union of Health - emphasized Luciano Flor, of the scientific direction of Motore Sanità - In Europe there are 36 million affected patients, as much as the population of Poland".
Therefore, rare diseases but not so much and sometimes without a cure. The Ern networks are a beacon with which to orient organizational models. Coming in the EU new resources: from next April a new joint action of the 27 member states moves with an integration of the European networks and 92 million of new investments.
The aim of the Padua conference is a unique vision, a comparison between companies and the launch of an innovative European project to define the future of care for Rare Diseases in Italy and Europe. Promoted by the scientific committee of the functional department Rare Diseases of the Padua Hospital-University, of which Giorgio Perilongo is the Coordinator, this event is born from the idea of proposing a moment of information on the ERN and a comparison between companies on the difficulties encountered in participating in such European networks.