On Sunday the 15th of October, a territorial meeting on Duchenne and Becker muscular dystrophy (DMD/BMD) will be held in Lamezia Terme at the Hotel Class, organised by Parent Project aps, the association of patients and parents of children and young people living with this rare genetic disorder.
The meeting will be dedicated to aspects related to the clinical management of young patients and will be an opportunity for in-depth analysis, as well as an important moment of confrontation between families, doctors and operators in the area.
Alongside the International Conference in February, which offers a comprehensive overview of current research and experimentation topics, Parent Project aps this year would like to offer families the opportunity to participate in a few local meetings. These are intended to offer insights into the proper clinical management of patients, with the added value of the presence of local specialists.
The proceedings will open at 10.00 a.m. with a welcome speech by Ezio Magnano, president of Parent Project aps and Antonio Vigoroso, member of the Board of Directors.
The morning will include an initial talk on the clinical management of the pathology, with specific reference to steroids. This will be followed by a talk on heredity in pathology, physiotherapy, and a talk on psychosocial aspects.
The afternoon will start with the presentation of the project, supported by Enel Cuore Onlus, 'The centrality of cardiological and pulmonological health in Calabria', and will continue with two talks on cardiac and respiratory management, respectively, and conclude with an overview of clinical trials, the Patient Registry and the Emergency Card.
"We are very happy to be back in Lamezia Terme with families, patients and specialists from the territory," says Ezio Magnano, President of Parent Project aps. "These territorial meetings continue to be an important reference point for all families and clinicians in the area. We are also very proud to be able to present here the project 'The centrality of cardiological and pulmonological health in Calabria' supported by Enel Cuore Onlus, which we thank very much on behalf of all patients."
Duchenne muscular dystrophy (DMD) is a rare genetic disorder that affects 1 in 5000 male infants. It is the most severe form of muscular dystrophy, it manifests itself in childhood and causes progressive degeneration of the muscles. Becker muscular dystrophy (BMD) is a milder variant, whose course, however, varies from patient to patient. There is no cure at present.
Parent Project aps is an association of patients and parents with child suffering from Duchenne and Becker muscular dystrophy. Since 1996, it has been working to improve the treatment, quality of life and long-term prospects of children and young people with the disease through research, education, training and awareness-raising. The fundamental objectives that have made the association grow to date are to assist and support families through a network of Listening Centres, to promote and finance scientific research and to develop a collaborative network capable of sharing and disseminating key information.