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May 2017
Francesca Cainelli MD, Dair Nurgaliev MD PhD, Kadischa Nurgaliyeva MD, Tatyana Ivanova-Razumova MD, Denis Bulanin PhD and Sandro Vento MD
April 2017
Altynshash Jaxybayeva MD PhD, Raushan Kenzhegulova MD, Lyazzat Baygazyieva MD, Francesca Cainelli MD and Sandro Vento MD
January 2017
Francesca Cainelli MD,Venera Tastanbekova MD, Dair Nurgaliev MD PhD, Natalya Lim MD and Sandro Vento MD
June 2016
Simone Baldovino MD, Antoni Montserrat Moliner MD, Domenica Taruscio MD, Erica Daina MD and Dario Roccatello MD

The European Union defines rare diseases (RDs) as life-threatening or chronically debilitating conditions whose prevalence is less than 5 per 10,000. Moreover, for many RDs, including those of genetic origin, combined efforts are required to reduce morbidity or perinatal or early mortality, and address the considerable decline in an individual's quality of life and socioeconomic potential. Their specificities, i.e., a limited number of patients and scarcity of relevant knowledge and expertise, make RDs a unique condition which requires wide cooperation at a supranational level. Many steps were therefore taken to develop a network of European Reference Centers and to improve RDs coding and classification. In Italy, the RDs issue was addressed in 2001 with the development of a national network and a national registry coordinated by the National Center for RDs of the Italian National Institute of Health. Registries are an important resource for the development of appropriate public health policies and research on specific RDs. Research on RDs is essential for the development of novel therapeutic approaches and requires the involvement of scientific societies and patient organizations. Nevertheless, the management of patients with chronic RDs requires a qualified care network. The network for RDs of Piedmont and Aosta Valley (North-West Italy) represents an example of health care organization based on the availability of advanced therapies close to the patient’s home.

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