Rare Diseases

The National Virtual Rare Diseases Institute was born in 2021. It includes 23 IRCCS and aims at fighting the neurological rare diseases by sharing in a functional way the existing skills as well as the diagnostic-therapeutic and research protocols and methodologies. In the first year of life, the activities are being devoted to: the harmonization and sharing of clinical, instrumental and laboratory diagnostic protocols and procedures; the creation of a common database to collect and share the information in a protected manner; the conduction of a survey of the technological resources, disease models, and innovative therapies available in the Virtual Institute to favour the design of common projects. The 23 IRCCS are investigating and treating a large number of rare diseases affecting children and adults; the harmonization process starts from some of them chosen as models: intellectual disability of childhood, ataxias and spastic paraplegias, hereditary neuropathies, mitochondrial diseases, and leukodystrophies.

Coordinator:

Davide Pareyson Istituto Neurologico Besta

Vice-Coordinator:

Enza Maria Valente Istituto Neurologico Mondino

Project manager:

To be defined Istituto Neurologico Besta

Advisory Board:

Maria Teresa Bassi La Nostra Famiglia _ Marina Grandis Policlinico San Martino _ Rocco Liguori Istituto Scienze Neurologiche Bologna _ Corrado Romano Oasi Maria SS Troina _ Federico Vigevano Ospedale Bambino Gesù

Board of Directors:

Davide Pareyson Istituto Neurologico Besta _ Enza Maria Valente Istituto Neurologico Mondino _ Giacomo Comi Ospedale Maggiore Policlinico _ Maria A. Rocca Ospedale San Raffaele _ Gianluigi Forloni Istituto Mario Negri _ Mario Clerici Don Gnocchi _ Vincenzo Silani Istituto Auxologico Italiano _ Eduardo Nobile-Orazio Humanitas _ Maria Teresa Bassi La Nostra Famiglia _ Paolo Volanti Istituti Clinici Scientifici Maugeri _ Rocco Liguori Istituto Scienze Neurologiche Bologna _ Rita Barresi Ospedale San Camillo _ Pasquale Striano Istituto Gaslini _ Marina Grandis Policlinico San Martino _ Filippo Santorelli Fondazione Stella Maris _ Federico Vigevano Ospedale Bambino Gesù _ Serenella Servidei Policlinico Gemelli _ Emiliano Giardina Fondazione Santa Lucia _ Alba Di Pardo Istituto Neuromed _ Massimo Carella Casa Sollievo della Sofferenza _ Corrado Romano Oasi Maria SS Troina _ Andrea AntinorI Istituto Spallanzani _ Andrea Pace Istituto Nazionale Tumori Regina Elena

Executive Board:

Caterina Mariotti Istituto Neurologico Besta _ Renato Borgatti Istituto Neurologico Mondino _ Fabio Triulzi Ospedale Maggiore Policlinico _ Vincenzo Donadio Istituto Scienze Neurologiche Bologna _ Paola Mandich Policlinico San Martino _ Filippo Santorelli Fondazione Stella Maris _ Alessandra Bolino Ospedale San Raffaele _ Riccardo Bellazzi Istituti Clinici Scientifici Maugeri _Marta Ciofi Degli Atti Ospedale Bambino Gesù