A rare genetic disease, it affects 1 in 5,000 newborn boys. Duchenne muscular dystrophy causes progressive degeneration of muscles. There is currently no cure

World Duchenne Muscular Dystrophy Awareness Day (Wdad), a major initiative promoted by the World Duchenne Organisation, is being celebrated around the world today

The aim of the day is to raise awareness of this rare genetic disease that leads to progressive muscle degeneration.

WOMEN AT THE CENTRE OF THE DAY

For the 2022 edition, World Duchenne Organization wants to focus on women: from carrier mothers and the clinical and genetic aspects to mothers as primary caregivers, from girls and young women living with Duchenne to family members such as sisters, grandmothers, aunts, wives and girlfriends, from the women’s support network to women in science and advocacy leaders.

RARE DISEASES, VISIT THE UNIAMO BOOTH AT EMERGENCY EXPO

THE DIGITAL EVENT AND SPOT

This important topic will be explored in an international global digital event this afternoon at 3pm, details of which are available at www.worldduchenneday.org.

Around 100 organisations from 46 countries around the world are active every day to make a difference for people living with Duchenne muscular dystrophy.

To raise awareness of this disease, a special spot has been created and is available on the website

THE DISEASE AND BABIES

Duchenne muscular dystrophy (DMD) affects 1 in 5,000 newborn boys.

It is the most severe form of muscular dystrophy, manifesting in early childhood and causing progressive degeneration of the muscles, leading, during adolescence, to a condition of increasingly severe disability.

There is currently no cure.

Research and treatment by a multidisciplinary team have improved the general condition and life expectancy of the children.

WORLD DUCHENNE ORGANISATION AND PARENT PROJECT APS

World Duchenne Organisation is a worldwide collaboration of Duchenne patient and family organisations 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 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 through research, education, training and awareness-raising.

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Source:

Agenzia Dire