Rare illness means a disease that affects less than 5 in 10,000 people: according to data from the World Health Organization (WHO), it is estimated that there are about 7000 rare diseases and that about 10% of the world population is affected.
In Piedmont, based on data from the Center for the Coordination of Rare Diseases (CMID), https: //webmail.esprimo.com/#_ftn1 to date, over 32,000 people are being treated for a rare disease. On Wednesday 28 February, on the occasion of World Rare Disease Day, from 9 to 12, in Room D of the Regional Health Department, Corso Regina 153 bis, in Turin, a conference will be held entitled "Patients, associations, institutions , researchers, united operators for rare diseases ", organized by the Forum of Rare Diseases Piedmont and Valle d'Aosta.
Among the speakers of the conference, Professor Dario Roccatello, director of the CMID and of the complex structure of Nephrology and Dialysis of the Giovanni Bosco hospital in Turin (Introduction and update on the data of the rare diseases registry), Dr. Simone Baldovino of CMID (L ' regional application of the 2017 essential assistance levels for rare diseases), Dr. Savino Sciascia (Infodemiology and rare diseases), Annalisa Bisconti and Luca Nave for the Forum of the Associations, as well as Emanuela Zandonà and Loredano Giorni of the Regional Health Department.
The Councilor for Health of the Piedmont Region Antonio Saitta met the representatives of the Forum of the associations that has been constituted for a year and is composed of 28 associations. The aim of the Forum is to unite the voices of individuals, patients and associations, to create "a chorus" that in a coordinated manner, can make the needs of patients be heard by those who have a duty to listen.
The Forum is established in close connection with the technical table for the rare diseases of the Region, with the CMID and with the Federation of rare childhood diseases. On the part of the Health Councilor, the willingness to continue and intensify the institutional collaboration with all the subjects dealing with rare diseases was reaffirmed.
Piedmont has always been at the forefront nationally in the field of rare diseases, with the extension of exemptions since 2005 and the presence, in many European networks, of hospitals such as the San Luigi Gonzaga, the Giovanni Bosco and the City of Health of Turin.