They expressed their opinions, advanced proposals and suggested improving actions. Yesterday’s meeting at the Polyclinic of Messina with the associations of patients with rare and complex pathologies was a unique opportunity for sharing, but above all of comparison on the implementation of the rare diseases desk.
“Participated health”; This is the title chosen to illustrate the path undertaken dedicated to the most fragile patients And for which it is often complex to reach a diagnosis. The Rare Diseases Descase Active from November 2024 is the first access door but the project – explained the general manager Giorgio Giulio Santonocito – is wider and plans to encourage a single supply chain through which the patient can be recognized and assisted. With the development of the electronic health file, in fact, we will be in a position to know the patient’s clinical history and this means that to an access to the emergency room, for reasons of different nature, the patient with a rare pathology, if already diagnosed by one of our centers, can be identified and followed in the right way “.
Present at the meeting together with the rector Giovanna Spatari, To the administrative director Elvira Amata and to the health director Giuseppe Murolo, the councilor for social policies of the Municipality of Messina Alessandra Calafiore who, in placing the initiative, expressed the closeness and interest of the administration towards the needs of the most fragile people and their families.
The counter constitutes a working method and the company is increasingly developing assistance approaches – also through the figure of the case manager Luisa Cucinotta – who can accompany the patient and follow him within the therapeutic diagnostic path.
From many sides the need for a real taking charge emerged; A concept also reiterated by the representatives of the company consultative committee Carmen Agnello and Marinella Ruggeri in light of the reports and experiences reported by the patients.
“Intercepting the needs of the territory – said the Spatari rector in conclusion is the purpose that we have set ourselves since the settlement of the new company direction. When we reach a diagnosis that often sounds like a tsunami, it is essential to be able to network and create synergies so that people do not feel alone. The path taken is certainly a beginning, but we want to continue with determination, conviction and humanity”.
“There have been 177 contacts at the Rare Diseases counter so far – highlighted Prof. Salvatore Cannavò, director UOC Endocrinology and referent of the counter – In 41 cases they were patients who did not have a rare disease, while 105 those placed within the dedicated agendas; A 31% was directed to other reference centers based on the pathology. 54 % come from Messina, 31 % from other provinces and 11 % from Calabria. The most pressing request that emerges from our patients – said Prof. Cannavò – is that of being able to have a timely diagnosis and it is what with the centralization at the counter is increasingly aimed at realizing “.
During the debate, presidents and representatives of national associations intervened, in connection, and regional in presence.