2017 is an important year for patients suffering from rare diseases, for their family members and for all those involved in taking charge.
At European level, the activities of the European Reference Networks (ERNs) have begun, international networks that bring together centers of excellence in the management of patients affected by homogeneous groups of rare diseases.
At national level, the Dpcm was approved on essential levels of assistance (LEA) which extends the exemptions from participation in health care costs for patients suffering from rare disease, providing coverage also for primary glomerulopathies and primary lymphedema.
The Piedmont Region, which since 2005 has promoted the expansion of rare disease exemptions to about 40 pathologies, participates in European networks of excellence with the City of Health and Science of Turin, the San Luigi di Orbassano and the S. Giovanni Bosco Hospital.
The 20th edition of the medical-scientific conference on Immune Pathology and Orphan Diseases will be held from 26 to 28 January 2017, organized by the Center for Immunopathology and Documentation on Rare Diseases (CMID) and by the complex structure of Nephrology and Dialysis of Giovanni Hospital Bosco di Torino, directed by Professor Dario Roccatello.
The twenty-year edition unites the three souls of the work group: rare diseases, rheumatological diseases and nephropathies.
Rare diseases will be treated in the sessions dedicated to diseases without a diagnosis and to the European Reference Networks, with the participation, among others, of Dr. Domenica Taruscio (National Center for Rare Diseases) and of Dr. William Gahl (National Human Genome Research Institute, NIH of Bethesda).
Rheumatologic and nephrological diseases will be treated during two extensive sessions dedicated to the theme How patients treat clinical patients, in which national and international experts will discuss the most current therapeutic strategies and the new frontiers of clinical research.
The appropriateness and impact of a correct patient approach will be the subject of other sessions dedicated to the use of biosimilar drugs and the containment of health costs.
Finally, the sessions dedicated to primitive immunodeficiencies and autoinflammatory syndromes, to the complications of the antiphospholipid antibody syndrome, to the hemolytic uremic syndrome, a disease made infamous for an epidemic that took place some years ago in Germany and France.
The conference will close on Saturday 28 January with the 2nd Turin Conference on Idiopathic Systemic Vasculitis with the participation of some of the leading international experts in the field.