Hemophilia, starts from Verona ‘We articulate on tour’

On 10 September, the FedEmo-sponsored campaign returns with the support of Sobi

The journey of ‘Articulate in tour’ continues. After various virtual stages, returns live, in Verona on 10 September, the training meeting on joint well-being and the importance of multidisciplinary care for people with haemophilia, a rare coagulation pathology that can lead to joint problems with the consequent progressive reduction of mobility. The tour is part of the ‘Articulate’ campaign, supported by Sobi with the patronage of FedEmo, which in two years of meetings throughout the boot has become a reference point for the joint health of those with haemophilia, thanks (also) to a site, www.articoliamo.com, full of clear and useful information for everyday life. In Italy there are about 5 thousand people affected by haemophilia, of which over 300 in the Veneto region.

In detail, the appointment of 10 September in the city of Verona is promoted by Aev, the Veronese Aps Haemophilia Association, and by the Pediatric Oncohematology of Verona. The meeting, dedicated to people with haemophilia and caregivers with the participation of doctors and specialists. Participation is free and subject to availability, upon registration at [email protected]. ‘Articulate in Tour’ will continue its journey arriving on October 1st in Castelfranco Veneto.

The event entitled “Hemophilia, therapies and joint wellness: let’s meet! From childhood to adulthood, the importance of a multidisciplinary approach at all ages“Sees the participation of Massimo Boaretti, president of Aev, Veronese hemophilic association Aps with Simone Cesaro, director of pediatric oncohematology, Elisa Bonetti, Uoc pediatric oncohematology, Annachiara Giuffrida, Uoc Transfusion Medicine, Giorgio Gandini, director of Transfusion Medicine, related to the Integrated Aou Verona , and by Marco Martinelli, Head of the Multifunctional Specialized Rehabilitation Unit of the Teresa Camplani Foundation, Domus Salutis nursing home (Brescia).

“With this meeting of ‘Articoliamo’ – explains Massimo Boaretti – we want to stimulate a more immediate exchange of information between patient-caregivers and specialists. Although the management of haemophilia today can count on therapeutic innovations that have changed its history, it affects the daily life of both patients and family members. Providing support and discussion on real doubts and needs is as important as making people aware of and informing people about aspects of the disease that can sometimes be underestimated or little known, such as joint well-being. Our association – he continues – a point of reference in Verona and its province, firmly believes in initiatives of this type to help improve the quality of life of people with haemophilia and their families ”.

During the meeting there will be moments of confrontation between patients and medical specialists, for resolve doubts, dispel myths and clarify drug therapies available today and on all aspects of joint health prevention. “The therapy of haemophilia is experiencing a phase of rapid change with the advent of new drugs that are effective not only in preventing joint bleeding, but also in improving the quality of life of the haemophilic subject by reducing the frequency of treatments,” he says. Simone Cesaro, director of pediatric oncohematology Aou Integrata of Verona. “This has allowed to shift the goal of the treatment of the haemophilia patient from the simple prevention of bleeding to the more sophisticated one of preservation of long-term joint well-being. The meeting – continues the oncohematologist – aims to inform patients and their families on therapeutic progress, to promote the prevention and early diagnosis of joint damage, and to educate on the correct principles of motor activity “.

“We are happy to be able to resume the Articoliamo in Tour meetings in the presence, – says Giampiero Marra, Medical Director Sobi Italy, Greece, Cyprus and Malta -. Meeting doctors and patients from all over Italy allows us to know the needs, needs and desires that revolve around the world of haemophilia. At Sobi we are convinced that, only through multidisciplinary work, it is possible to allow people with haemophilia to open up to a free and full life, protected and safe. However, it is important to remember that all of this is possible thanks to correct therapeutic strategies available and clear and complete information to the patient on the importance of joint well-being; today a simple, painless, non-invasive ultrasound is enough to monitor the health of one’s joints ”.