In occasion of the Rare Disease Day, on february 29th, 2016, the Association has organized the event “Together, building a voice net for the Rare Diseases World Day” at the Fondazione Carigo in the city of Gorizia (Italy)
The conference schedule was:
- presentation of the Association Conquistando Escalones and the rare disease LGMD1F – 1F limb-girdle muscular dystrophy.
- Speech of the Dr. Adriana Fasiolo, general practitioner;
- Speech of Dr. Bruno Bembi, Director of the Rare Diseases Regional Center;
- Projection of the short film “Come tutti gli altri” (As al the rest) about the life of an affected of LGMD1F.
The event has had a great success with more than 100 persons who listened carefully and participated at the presentation of the Association and the LGMD1F disease and the interesting interventions of Dr. Fasiolo who talked about the outlook of a general practitioner about the rare diseases, and Dr. Bembi who talked about de Director of the Rare Diseases Regional Center and the regulations.
It was given special attention to the sensitization about the rare diseases and in particular about the problems to which an affected of a rare disease has to cop with and which he has to live with.
The sort film “Come tutti gli altri”, about the life of a LGMD1F affected, made by Calamaro Video had been so appreciated.