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Rare Diseases

Laboratory of Documentation and Research on Rare Diseases

Head
Erica
Daina
Head Laboratory
Rare Diseases
erica.daina@marionegri.it
Senior Advisor
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The Laboratory of Documentation and Research on Rare Diseases was created with the idea of bringing together different skills to help patients by encouraging the availability of up-to-date information and knowledge advancement. Since the beginning of its activities, a database on rare diseases has been established and research projects have been carried out for some of them. Very active efforts have been made in the field of dissemination and training. The Laboratory has collected clinical data on more than 31,000 patients and their families with more than 1,000 different rare diseases. These activities also made it possible, for some of the reported diseases, the implementation of clinical research trials. Great experience in implementing rare disease registers was developed.

The Laboratory staff is directly involved in the ongoing clinical research activities and contributes to the maintenance of the certified Biobank of Rare and Renal diseases.

Since 2001 is the Coordinating Centre of the Regional Network for Rare Diseases in the Lombardy Regionand collaborates with the Istituto Superiore di Sanità in Rome within the National Network for Rare Diseases.

RESEARCH AREAS

Head Unit
Elena
Bresin
Head Unit
elena.bresin@marionegri.it
Staff
Grazia
Mascellaro
Researcher
grazia.mascellaro@marionegri.it
Amantia
Imeraj
Researcher
amantia.imeraj@marionegri.it
Miriam
Rigoldi
Researcher
miriam.rigoldi@marionegri.it
Arrigo
Schieppati
Researcher
arrigo.schieppati@marionegri.it
Camillo
Carrara
Researcher
camillo.carrara@marionegri.it
Laura
Bottanelli
Researcher
laura.bottanelli@marionegri.it
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Codice:

International Consensus on Cardiopulmonary Resuscitation.

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Head
Erica
Daina
Head Laboratory
Rare Diseases
erica.daina@marionegri.it
Senior Advisor
No items found.

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