With “Let’s set the sails!” it becomes a network for rare diseases. In Campania, projects to enhance assistance to the rare disease

With “Let’s set the sails!” it becomes a network for rare diseases. In Campania, projects to enhance assistance to the rare disease
With “Let’s set the sails!” it becomes a network for rare diseases. In Campania, projects to enhance assistance to the rare disease

“Working in synergy with all the players involved in the Rare Diseases Network, especially with patient associations, will allow us to create stronger and more resilient healthcare in Campania”.

June 23, 2022: unity is strength. It is a truth, not just a saying, and in an area as complex as that of early diagnosis and research in the field of rare diseases, being online means being stronger to tackle these diseases (which are so rare they are not) and to give answers to the rare disease patients and their families. The significance of the strength of being online emerged in the new stage, this time entirely in Tuscany, of the initiative “Let’s set the sails! Wind behind for Thinkrare research ”.

The number of known and diagnosed rare diseases oscillates between 7,000 and 8,000, but it is a figure that grows with the advancement of science and, in particular, with the progress of genetic research. We are therefore talking about the 6-8% of the populationtherefore not of a few sick people, but of millions of people in Italy and even tens of millions throughout Europe. The possibility of implementing therapeutic interventions at an early stage can significantly improve the patient’s state of health and quality of life. For this reason it is essential to promote knowledge and early diagnosis for these pathologies.

Important steps have been taken in the Campania Region and were illustrated by Antonio PostiglioneDirector General for the Protection of Health and the Coordination of the Regional Health System of the Campania Region, during the presentation in Tuscany of the initiative “Let’s set the sails!”.

“We have recently strengthened the Rare Diseases Regional Coordination Center located at the AO dei Colli with additional funding, with the aim of continuing to strengthen the Rare Diseases network and improve the care of rare patients. We continued to work on the diagnostic therapeutic assistance paths by firing two new PDTAs (Leber and Congenital Heart Diseases) at the end of last April and to revise, thanks to continuous monitoring, PDTAs fired in the year 2020. We deeply believe in the power of communication and information that they represent the two pillars on which we have built this project. We believe even more in teamwork because by joining forces synergistically, great things can be achieved. This is the reason that prompted us to share this Campania initiative with the Lazio Region, the Liguria Region, the Tuscany Region and the University of Marseille ”.

“The Campania Region has, for several years already, dealt with problems related to assistance for rare diseases, planning and implementing its clinical-epidemiological network through the identification of network principals – he explained Ugo Trama, Head of Pharmaceutical and Prosthetics and Staff 93 Campania Region -. This is a structure strongly desired by the Region that can boast of a technical working group made up of a multidisciplinary team of experts, among which the pharmacist plays a fundamental role for the skills on drugs, devices and special foods and acts as a promoter, together with associations, of a sharing of knowledge and research on orphan diseases “.

Strategic are theinformation and networking with general practitioners and healthcare companies. “We have implemented an information action with general practitioners and we are in constant contact with healthcare companies so that there is constant supervision of the strengths and weaknesses so that we can start with initiatives that are increasingly directed at the enhancement of care for rare patients – he explained Barbara Morgillo, of the Directorate General for Health Protection of the Campania Region -. Working in synergy with all the players involved in the Rare Diseases Network, especially with patient associations, will allow us to create stronger and more resilient healthcare in the Campania Region ”.

The initiative “Let’s set the sails! Wind behind for Thinkrare research ” aims to promote knowledge, early diagnosis and scientific research on rare diseases in Italy and in Europe. It was born from the idea of ​​two sailors from Campania Mario Santinithoracic surgeon of the University of Campania “Luigi Vanvitelli, e Rosario Graccotextile entrepreneur, Members of the Delegation of Naval League of Torre Annunziata (Na) chaired by Antonella Giglio who immediately supported them.

The initiative, welcomed by the Directorate General for Health Protection and the Rare Diseases Coordination Center of the Campania Regionhas been transformed into the project that since 6 June, when the two sailing boats left from the port of Torre Annunziata in Naples, is making headlines throughout Italy and soon also in Europe, when between 5 and 7 July the two boats will arrive in France, in Marseille, the final stage.

The logistical organization of the nautical stages, entrusted to the Lega Navale Delegation of Torre Annunziata (Na), is supported by Italian Naval League and is supported by Motori Sanità for the organization of the institutional stages along the path with the unconditional contribution of Amicus
Therapeutics, I asked GRD, Takeda And Medisol. Also participating in the initiative are i Rare Diseases Coordination of the Regions of Tuscany, Lazio and Liguriain collaboration with the University of Campania “Luigi Vanvitelli” And the University of Marseille. The next Italian stops will be the Ligurian ports.

Motor Health Press Office

[email protected]

Liliana Carbone – Cell. 347 2642114

Marco Biondi – Cell. 327 8920962

www.motoresanita.it


The article is in Italian

Tags: Lets set sails network rare diseases Campania projects enhance assistance rare disease

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