February 28 is World Rare Disease Day to ask for equity for people with rare diseases, i.e. social opportunities, non-discrimination, education and work. On this occasion, the SCIENZA/ARTE&SOGNI/VOLERI (Science/Art&Dreams/Will) exhibition opened to the public at the Ospedale dell’Angelo in Mestre (Venice), organized by the association Rete Malattie Rare OdV www.retemalattierare.it and thanks to dr. Edgardo Contato, director of ULSS3 Serenissima.
The project was born in 2019 from the idea of Renza Barbon Galluppi, honorary president of UNIAMO F.I.M.R. and active member of Rete Malattie Rare association, thanks to the collaboration of the artist Gianmaria Potenza with the lace makers of the Settemani school in Venice. The exhibition, which aims to raise awareness on the theme of rare diseases, compares, in the form of a metaphor, the production phases of Venetian lace/needle Buranello with the organizational process of the Diagnostic Therapeutic Assistance Pathway for people with rare diseases.
Gianmaria Potenza’s artwork “Transparent sculpture n. 32″ (2018), grinding wheel engraving on industrial crystal plate 30×40 cm, was chosen and reproduced in needle lace by the lace makers. The sculpture and its elaborate transformation in Venetian lace lend itself to representing the European Network of rare diseases, where the patient and his family are at the centre, the social-health assistance system is present next to it and subsequently, the regional network /interregional Centers of Excellence, connected to the European network for the 24 groups of rare diseases.
In the same spaces of the exhibition (on the 1st floor, ambulatory area), a stand provides specific information to people interested in the theme of rare diseases. All the informative materials are published by the Italian Federation of Rare Diseases UNIAMO F.I.M.R. to which the Rare Disease Network association has been a federated association and an active member since 2004.
Ph: Matteo Danesin
Renza Barbon Galluppi