NewsHealthDuchenne muscular dystrophy, 7 September is World Day

Duchenne muscular dystrophy, 7 September is World Day

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Today, 7 September, the World Awareness Day on Duchenne Muscular Dystrophy is celebrated all over the world, an important initiative promoted by the World Duchenne Organization and coordinated, at the Italian level, by Parent Project aps. The aim of the day is to raise awareness of this rare genetic disease that leads to progressive muscle degeneration. And for the 2021 edition, World Duchenne Organization wants to focus on the theme “Duchenne and adult life”. In recent decades, the life expectancy of people with Duchenne has increased significantly and becoming adults living with Duchenne presents new challenges, difficulties and opportunities. This very important issue will be treated in its clinical, psychological and social aspects within an international global digital event to be held today from 2 to 4 pm, details of which are available on the website www.worldduchenneday.org. About 100 organizations from 46 countries around the world are active every day to make a difference for people living with Duchenne muscular dystrophy. And it is precisely thinking about this great global movement that the World Duchenne Organization in the 2021 spot dedicated to World Day wanted to emphasize the value of the words ‘Duchenne’, ‘community’, ‘awareness’ and the power of word of mouth because only in many and together It is possible to make a difference.Duchenne muscular dystrophy (Dmd) – the note recalls – affects 1 in 5,000 male newborns. It is the most severe form of muscular dystrophies, occurs in early childhood and causes a progressive degeneration of the muscles, leading, in the course of adolescence, to an increasingly severe condition of disability. At the moment, there is no cure. Research and treatment by a multidisciplinary team have made it possible to improve the general conditions and life expectancy of children.World Duchenne Organization is a worldwide collaboration between Duchenne family and patient organizations that aims to improve the treatment, quality of life and long-term prospects for all individuals with Duchenne muscular dystrophy (Dmd and Bmd). Parent Project aps is the association of patients and parents with children with 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 through research, education, training and awareness. “I send you warm greetings on this new Duchenne Muscular Dystrophy Awareness Day, joining the hope of a better future for all people living with this disease. I pray for all of you and please, I ask you to do the same for me. Fraternally, Francis “. Thus the Pope in the message, sent again this year, to the community of associations and patients affected by the diseases of Duchenne and Becker, on the occasion of the World Day, which is celebrated today.

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