Rare diseases, haemophilic joint health campaign makes a stop in Lazio

Taking care of joint health and promoting its well-being thanks to new services for patients, training opportunities with the most important haemophilia specialists, and a site full of clear and useful information in everyday life. In addition, the possibility of performing joint screening thanks to portable ultrasound scanners that are arriving in many Italian haemophilia centers. These are the ingredients of the success of ‘We articulate‘- campaign supported by Sobi with the patronage of FedEmo – born for promote joint well-being in people with haemophilia, a rare coagulation disease which has arthropathy among its most frequent complications.

The ‘Articoliamo’ tour, now in its own fifth stage, continues his journey through Italy and lands in Lazio on 14 April at 6 pm with an online meeting. To participate, simply connect to the zoom platform to discuss live streaming with Cristina Santoro and Erminia Baldacci, hematologists at the Mec Center of the Uoc of Hematology of the Policlinico Umberto I in Rome, Luana Poggini, orthopedic consultant at the Mec Center of the Policlinico Umberto I, Filippo La Cava, orthopedic surgeon at Orthopedic Surgery of the S. Spirito Hospital in Rome, Rita Tramontozzi, physiatrist at Uoc Physical Medicine and Rehabilitation of the San Giovanni Addolorata Hospital in Rome, Adriana Antonaci, physiatrist consultant of the Ael Lazio Project “Rehabilitation to measure of patient “, Matteo Orlando, physiotherapist, Francesca De Rubeis, physiotherapist.

During the meeting “The multidisciplinary approach and the well-being of the person with haemophilia. From screening to exercise, the tools to stay healthy”, Promoted by the Lazio Onlus Hemophilia Association, the different aspects of the pathology: the role of physical activity, the importance of the multidisciplinary approach, used for some time by the Mec center of the Policlinico Umberto I thanks to a team of specialists related to each other by a common protocol that guarantees the haemophilia patient a targeted and coordinated treatment and prevention of joint damage, orthopedic surgery and post-operative rehabilitation of haemophilia patients. Objective: to sensitize patients on the importance of prophylaxis of long-term half-life factors and on the key role of ultrasound to detect joint damage early and avoid severe arthropathies.

“As an association, we have been following and supporting the ‘Articulate’ project for some time. Both for the usefulness of the proposed contents and for the simple and exhaustive approach to the joint problems of haemophiliacs and to the issues concerning everyday life, from training to nutrition. For this reason, we thought that ‘Articulate’ was the most appropriate context to organize the regional meeting between specialists and people with haemophilia in the Lazio region and to tell about all our initiatives on the subject “, he says Ernesto Borrelli, president of the Lazio Hemophilia Association.

Prophylaxis is the gold standard of therapy for haemophilia patients. With prophylaxis, in fact, micro-bleeding and in particular joint hemorrhages are also prevented, thus avoiding the development of haemophilic arthropathy. With the advent of new drugs such as long-life concentrates and non-replacement therapy, doctors have the possibility to choose from a number of options, to offer personalized prophylaxis therapy, tailored to the needs of each patient “, he explains. Cristina Santoro.

“Joint well-being, the possibility of controlling bleeding and a multidisciplinary approach are the key to the prevention and treatment of haemophilic people”, underlines Filippo La Cava. “The orthopedist through infiltrative therapy and arthroscopic or prosthetic surgery intervenes to preserve or replace the joints when the joint damage has already occurred. effective, simple and effective dissemination tool for patients “.

Physical activity is essential for the well-being of the haemophilic patient’s joints. The role of physiotherapy is of considerable importance in the multidisciplinary approach to patient management. Great results are obtained with constant and long-lasting work ”, underlines the physiotherapist Francesca De Rubeis. And it is precisely this message that the Articoliamo campaign aims to bring to the attention of patients and caregivers. With expert advice for proper prevention.

“Sobi has always considered it important to promote management of the person with haemophilia that takes into account aspects and variables that go beyond the drug alone”, he says. Sergio Lai, VP and General manager of Sobi Italia. “Our commitment in bringing the ‘Articoliamo’ campaign throughout Italy stems from the deep conviction that, only through multidisciplinary work, is It is possible to allow people with haemophilia to open up to a free and full life, protected and safe. On the occasion of the World Hemophilia Day “, which is celebrated on April 17” it is important to remember that all this is possible thanks to the correct therapeutic strategies available and to a clear and complete information for the patient, for a life without compromise, protecting the joints and improving general well-being “.

The event is open to the public and free to participate. To access the live streaming, simply connect via PC, tablet or smartphone at the following link: https://us02web.zoom.us/j/86720291187#success Registration is not required. The website www.articoliamo.com has been online since July 2020, while ‘Articoliamo in Tour’ will continue in other cities throughout the country.


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