MEMBER ACTIVITY: Rare Open Day at Endo-ERN Azienda Ospedaliero-Universitaria Policlinico Umberto I

RDD pic

The Umberto I Polyclinic is at the forefront in the management of Rare Diseases, having established the Interdepartmental Center for Rare Diseases (CIMR), which coordinates the care of patients with Rare Diseases at regional, national, and international levels. This is made possible thanks to the full sharing of the objectives of the European Networks for Rare Diseases (ERN).
In light of this, to further strengthen the ongoing commitment in the field of Rare Diseases, on the occasion of the International Rare Disease Day, scheduled for February 29th, the Umberto I Polyclinic is organizing the first edition of the “Rare-Open Day”, offering consulting and informative services to patients with suspected or diagnosed rare diseases, and their families. The aim of this initiative is to raise awareness among the population about the importance of early diagnosis and to facilitate access to treatment, providing information about available healthcare and therapeutic pathways in the territory, as well as about innovative and experimental therapies available at the AOU Umberto I Polyclinic.

Over 30 specialized doctors from 20 different medical specialties, for a total of more than 250 rare diseases, will take turns participating in the initiative from 9 am to 6 pm. Access will be granted on a first-come, first-served basis, by sending an email specifying the specialty or the rare disease, if known or suspected. A specialized operator will conduct the triage and direct the patient to the appropriate specialist.

After the event, associations will meet with doctors and patients for a day of training and information, aiming to facilitate access to the diagnostic and treatment pathway for people living
with a rare disease.


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