2024: Raise Your Voice for Duchenne

Raise your voice for Duchenne

The World Duchenne Awareness Day 2024 theme is ‘Raise your voice for Duchenne’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this year’s theme, WDAD supports creating a society that provides equal opportunities for all. This year we organize the 11th edition.

This year’s theme emphasizes the importance of amplifying voices to advocate for the rights, inclusion and well-being of people living with Duchenne muscular dystrophy (DMD) and other dystrophinopathies.

On September 7 we invite everyone, irrespective of their personal connection to Duchenne, to join in creating a more inclusive world where people living with disabilities are empowered to thrive.

WDAD Documentary

On September 7, the World Duchenne Organization will launch a WDAD documentary that portrays the lives of people living with Duchenne Muscular Dystrophy across the globe and to share their journeys, challenges, and successes. The documentary captures the resilience and determination of the Duchenne community in building positive change everyday.

For inquiries, please contact Suzie-Ann Bakker, communications coordinator at the World Duchenne Organization.

World Duchenne Awareness Day 2023 Breaking Barriers

2023: Duchenne – Breaking Barriers

Official #WDAD2023 documentary

On September 7, the World Duchenne Organization launched a WDAD documentary that portrays the lives of people living with Duchenne Muscular Dystrophy across the globe and how they are each breaking barriers in their personal lives. Using storytelling techniques, the organization aims to provide insight into the barriers someone living with a rare disease may face, and provide encouraging and inspiring ways to overcome these challenges. The video is directed by Nicoletta Madia and produced by Arimvideo.

We urge everyone to share the documentary with the wider community. By working together, we can create a more inclusive and supportive society for people living with dystrophinopathies.

Theme: Breaking Barriers

The World Duchenne Awareness Day 2023 theme is ‘Duchenne: Breaking Barriers’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this, WDAD supports creating a society that provides equal opportunities for all. This year we organize the 10th edition.

Duchenne: Breaking Barriers

People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities. That’s why on September 7th we call on you to take on responsibility and help break down barriers for people living with DMD/BMD. Only together as a society can we create an inclusive society and build a better future.

Some examples of topics aimed at breaking down barriers in DMD include:

  1. Access to care: Ensuring that individuals with DMD/BMD have access to comprehensive and affordable medical care to manage their condition and improve their quality of life.
  2. Accessibility: Ensuring that public spaces, such as schools, workplaces, and community centers, are accessible for people with DMD/BMD.
  3. Advocacy: Raising awareness about the challenges faced by individuals with DMD/BMD and advocating for policies and programs that promote social inclusion and equal opportunities for people with disabilities.
  4. Community engagement: Encouraging individuals with DMD/BMD to participate in community activities and providing resources and support to help them do so.
  5. Employment opportunities: Creating job opportunities for people with DMD/BMD and providing support for them to find and maintain employment.
  6. Inclusive education: Providing opportunities for people with DMD/BMD to attend mainstream schools and participate fully in the educational experience.

For inquiries, please contact Suzie-Ann Bakker, communications coordinator at the World Duchenne Organization.

2022: Women & Duchenne

WORLD DUCHENNE AWARENESS DAY 2022

September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be ‘Women & Duchenne‘.

Awareness raising materials, such as the official press pack, high resolution logos, key visuals and images can be found here.

An educational event accessible to everybody will take place on September 7. The event launches at 15:00 CEST. Click the link below and select the bell icon to be notified when the event begins.

WOMEN & DUCHENNE

By creating specific educational materials World Duchenne Organization will highlight all the aspects connected with Duchenne and the female world:

  • Carriers: genetic and clinical aspects
  • Care considerations for female carriers
  • Mothers as primary caregiver
  • Girls living with Duchenne
  • Spouses and girlfriends
  • Female family member network of support
  • Women in science
  • Female international advocacy leaders

WORLD DUCHENNE ORGANIZATION

On September 7, the World Duchenne Organization will be hosting an online event. During this event, experts share their stories and experiences surrounding women and girls in the field of DMD/BMD. 

PRESS RELEASE

Click the picture below to see the official World Duchenne Awareness Day 2022 press release. 

For inquiries, please contact Suzie-Ann Bakker

2021: Adult Life & Duchenne

WORLD DUCHENNE AWARENESS DAY 2021

September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be ‘Adult Life & Duchenne’. An online event accessible to everybody was taking place on September 7.

ADULT LIFE & DUCHENNE

Over the past decades, life expectancy of individuals affected by Duchenne MD has increased significantly, and adults with Duchenne are not an exception anymore. Adult life with Duchenne comes with new challenges and opportunities as well as with new medical issues. This World Duchenne Awareness Day, we are globally advocating to create opportunities for young adults and adults with Duchenne to live their lives to the fullest.

WORLD DUCHENNE ORGANIZATION

On September 7, the World Duchenne Organization will be hosting an online event. During this event, experts share their stories and experiences surrounding DMD/BMD and adult life. With this, we aim to inspire and empower young adults with Duchenne and their families to think and plan for the future.

PRESS RELEASE

Click the picture below to see the official World Duchenne Awareness Day 2021 press release. The press release is available in Arabic, Bulgarian, Dutch, Finnish, Greek, Spanish, Polish, Russian, Ukrainian and Vietnamese.

Visit the ‘Download Materials‘ page for more information, visuals and materials to raise awareness.

For inquiries, please contact Suzie-Ann Bakker

2020: Duchenne and the Brain

DUCHENNE AND THE BRAIN

September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be Duchenne and the brain.

Online conference on Duchenne and the Brain

On September 7, the World Duchenne Organization is hosting a livestream where experts share their knowledge on DMD/BMD and the brain. The livestream is available as recording afterwards. This online event is for clinicians, researchers, families and teachers. We can all learn something from this important aspect in Duchenne and Becker MD.

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This conference has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 847826 – BIND project

Program

In the two-hour livestream, experts will provide their expertise in the field of DMD/BMD. Next to this we have parents explaining the impact of having a child with DMD/BMD who is experiencing learning difficulties and/or behavior problems. 

Click here to see the program (pdf).

The online conference is also available with Arabic subtitles:

دوشين والدماغ – اليوم العالمي للتوعية بمرض دوشين 2020

The same protein that is missing in the muscle causing muscle breakdown, is also missing in the brain. This is causing problems such as learning difficulties or behavioural issues such as ADD, ADHD, OCD and autism. For many families in day to day life, this is causing more stress and worries than the physical problems. The World Duchenne Organization identified this need and is currently participating in the BIND project under European Union’s Horizon 2020 research and innovation program under grant agreement no 847826. 

Speakers

  • Prof. Eugenio Mercuri, pediatric neurologist Policlinico Gemelli, Italy
  • François Lamy, DMD father, France
  • Dr. Nathalie Doorenweerd, researcher LUMC and University of Newcastle, UK
  • Martha Stein Carotta Henriques, DMD mother, Brazil
  • Dr. Jos Hendriksen, neuropsychologist Kempenhaeghe, NL
  • Kathi Kinnett, clinical care advisor PPMD, USA
  • Prof. Francesco Muntoni, pediatric neurologist GOSH London, UK
  • Elizabeth Vroom, chair World Duchenne Organization, NL