On September 7th, we will celebrate the 11th World Duchenne Awareness Day (WDAD), a special day recognized globally. Since we started in 2014, this day has grown in significance, highlighting the importance of improving the lives of people with Duchenne Muscular Dystrophy (DMD) worldwide. In this video, Elizabeth is calling on all to join World Duchenne Awareness Day and raise your voice for Duchenne muscular dystrophy.
This year, the theme of WDAD is ‘Raise your voice for Duchenne.’ This theme is not only for the Duchenne community but also aims to involve society at large. The goal is to ensure that individuals with Duchenne can live fulfilling lives without being hindered by the challenges that people with disabilities often face.
This includes advocating for accessibility in public transportation, leisure activities, jobs, and education. Accessibility is everywhere, and it is clearly described in legislation and proposals from the United Nations and the European Committee, that accessibility is a human right.
However, many people with Duchenne still are hindered due to the lack of implementation of these accessibility standards, leading to discrimination. Although not the biggest challenge that Duchenne patients are facing, all organizations are working hard to address this issue. Independent living should be another guaranteed human right we have to fight for around the globe. We should do our very best to make this life possible within their position.
The United Nations clearly mentioned when they recognized World Duchenne Awareness Day that access to proper diagnosis is very important for Duchenne, as it is essential to have access to good care and support. Without a diagnosis it is really hard to get the support you need.
