Category Archives: Geen categorie

World Duchenne Awareness Day – 7 sept




Duchenne muscular dystrophy is a devastating disease which affects approximately 250.000 children around the world. The vast majority of Duchenne patients are boys and young men who progressively lose their physical functions before they inevitably die of this cruel disease.

Duchenne Muscular Dystrophy is one of the most common fatal genetic disorders which affects on average 1 in every 3500 newborn boys, with very few girls suffering from the disease. Duchenne boys first lose the ability to walk during their childhood days and as they grow into adolescents they also lose the ability to use their arms, carry out everyday activities such as writing or feeding themselves, and their ability to breathe deteriorates as well. And some boys have learning issues. As they grow into young men Duchenne boys finally succumb to the disease and die due to respiratory problems or heart failure. But many don’t reach adulthood in the first place.

Duchenne patients urgently need good medical care. This improves not only their quality of life but it is also proven to prolong life spans by between 10 and 20 years. The knowledge about good medical care is widely available, but the majority of Duchenne boys still doesn’t have access to good care and facilities. We need to address this and find ways to improve the situation for all Duchenne patients. There is currently no cure for Duchenne Muscular Dystrophy but for the first time ever there are several drugs under development. For a very small group of patients a first drug recently received Conditional Approval in Europe. Now we have to make sure that all Duchenne patients will benefit from new developments as soon as possible!

To achieve our mission Raising Awareness about the disease is key. You can help us raise awareness in any means possible. Please watch and share the video, help us to make sure as many people as possible will understand we all need to do something!