On 18 and 19 June, in Calambrone, Tuscany, the ELA Italia Onlus conference was held on the theme: Intervention strategies and improving the quality of life of patients with Leukodystrophy.
The conference, organised by Prof. Roberta Battini of the IRCCS Stella Maris of Pisa, brought together doctors from the main centres specialising in Leukodystrophy, Prof. Enrico Bertini from the Bambin Gesù Hospital in Rome, and Dr. Mariasavina Severino from the Gaslini Hospital in Genoa, Elena Ambrosini of the ISS in Rome, Valeria Calbi of the IRCCS San Raffaele in Milan, Drs Sara Mazzotti, Paola Cristofani, Elena Moretti, Silvia Perazza of the IRCCS Stella Maris in Pisa, Dr Davide Tonduti of the Buzzi Paediatric Hospital in Milan, Dr Matteo Masolini of the Meyer Hospital in Florence.
Many families were present with their children from all over Italy. The associations Canavan, Più Unici che Rari for Alexander disease and the Italian Adrenoleukodystrophy Association participated with their representatives.
This event was an important and lively moment of contact between the scientific world and the families who are confronted every day with the harsh reality of the disease.
The President of ELA Italia, Viviana Rosati, said :
“The Conference is for us a starting point, the Association must grow and for this objective to be achieved, we need the contribution of all families, in order to form a network of exchange and sharing to help our children learn how to participate in daily life: eating, drinking, moving, breathing, communicating”.
We very much hope to be able to participate in clinical studies by playing an active role in research. The conference was also a powerful encouragement for all the experts concerned by leukodystrophies, because seeing and listening to all our families is a strong motivation to continue our daily work and join our efforts in the search for results and solutions.
During the meeting, it became clear that urgent action is needed to involve all families affected by the problem of leukodystrophies at a national level.
This need, shared by all the members of the Council, encourages us to work with even greater determination to promote concrete actions to achieve what is already a consolidated reality beyond the Alps.