The documentary of World Duchenne Organization launched on World Duchenne Awareness Day
Duchenne muscular dystrophy is a condition that involves the whole family. And it is the family that lies at the heart of care—bonds that give strength and meaning to everything.
Family can also be the place where we grow and learn, like school. It can be found as well in the communities where we are supported and included.
These bonds help build the future, break down barriers and give courage.
The documentary “Family: the heart of care” highlights these connections through three stories collected in Japan, Mauritius and Greece.
Three different stories, united by the determination to always create the best possible life.
The documentary, promoted by the World Duchenne Organization, is directed by Nicoletta Madia and produced by Arim Communication.
World Duchenne Awareness Day has received the patronage of the European Parliament, a recognition of great significance that highlights the importance of research, awareness, and support for people living with Duchenne muscular dystrophy and their families.
“Family means everyone helps each other, everyone is there for each other, even in hard times.”
Family means so much. People who are part of our lives and who enrich them.
Parents, siblings, grandparents, uncles, aunts, cousins, nephews and nieces.
But family is not only that group of people to whom we are biologically and emotionally tied. Friends, schoolmates, colleagues also become part of our family—of those shared journeys and feelings that belong to life.
“Family” is the theme of the World Duchenne Awareness Day 2025.
Three stories are at the heart of the documentary that will be launched on this occasion.
The journey begins in Japan, where Nana builds a future full of bonds for her little son, supported by her parents, the school, and a newly born association created to improve the lives of people living with Duchenne muscular dystrophy.
It continues in Mauritius, where a father weaves ties and change in the memory of his son, promoting a great social transformation.
The journey ends in Greece, with three brothers growing up together, nourished by dreams and future.
The documentary, directed by Nicoletta Madia and produced by Arim Communication, will be released on September 7 at 2:00 pm CEST on www.worldduchenneday.org.
With this year’s theme, World Duchenne Awareness Day (WDAD) highlights the role of family members for people living with Duchenne and Becker muscular dystrophy.
Living with Duchenne muscular dystrophy (DMD) is a journey marked by both physical challenges and emotional resilience. At the center of this journey is family. The love, support, and daily involvement of family members play a vital role—not just in caregiving, but in shaping the quality of life and emotional well-being of those living with DMD.
For a person with Duchenne, parents are often their fiercest advocates and most devoted caregivers; siblings are companions and lifelong friends; grandparents, uncles and aunts are a steadying presence. Family can also be the community where people live in an inclusive way.
WDAD Documentary
On September 7, the World Duchenne Organization launched a WDAD documentary. This powerful documentary followed families from different corners of the globe as they navigate life with Duchenne muscular dystrophy. Through intimate interviews and everyday moments, it reveals not only the medical and emotional challenges of DMD, but also the deep love, resilience, and hope that unite families across cultures. More than a film, it is a global call for awareness, understanding, and unity.
About Duchenne and Becker muscular dystrophy
Duchenne Muscular Dystrophy is a rare disorder that causes muscles to become weaker over time until it affects the whole body. Approximately one in every 5.000 boys is born with the disease. It is caused by a mutation on the X-chromosome, that is why mainly males are affected. First walking becomes difficult, then other motor functions follow and ultimately it affects the ability to breathe as well as the function of the heart, as the heart is a muscle too. The missing protein also has a function in the brain, so learning- and behavior issues can also be part of the disease. Becker Muscular Dystrophy (BMD) is considered to be a less severe form of DMD.
About World Duchenne Awareness Day
World Duchenne Awareness Day (WDAD) is an annual event held on September 7. WDAD is a global event aimed at raising awareness about Duchenne and Becker muscular dystrophy. The day promotes education, advocacy, and social inclusion initiatives to improve the quality of life for people living with dystrophinopathies. Secondly, it is providing a platform to share personal stories and experiences of those living with the disease.
With this year’s theme, World Duchenne Awareness Day (WDAD) highlights the role of family members for people living with Duchenne and Becker muscular dystrophy.
Living with Duchenne muscular dystrophy (DMD) is a journey marked by both physical challenges and emotional resilience. At the center of this journey is family. The love, support, and daily involvement of family members play a vital role—not just in caregiving, but in shaping the quality of life and emotional well-being of those living with DMD.
For a person with Duchenne, parents are often their fiercest advocates and most devoted caregivers; siblings are companions and lifelong friends; grandparents, uncles and aunts are a steadying presence. Family can also be the community where people live in an inclusive way.
WDAD Documentary
On September 7, the World Duchenne Organization will launch a WDAD documentary. This powerful documentary follows families from different corners of the globe as they navigate life with Duchenne muscular dystrophy. Through intimate interviews and everyday moments, it reveals not only the medical and emotional challenges of DMD, but also the deep love, resilience, and hope that unite families across cultures. More than a filmit is a global call for awareness, understanding, and unity.
About Duchenne and Becker muscular dystrophy
Duchenne Muscular Dystrophy is a rare disorder that causes muscles to become weaker over time until it affects the whole body. Approximately one in every 5.000 boys is born with the disease. It is caused by a mutation on the X-chromosome, that is why mainly males are affected. First walking becomes difficult, then other motor functions follow and ultimately it affects the ability to breathe as well as the function of the heart, as the heart is a muscle too. The missing protein also has a function in the brain, so learning- and behavior issues can also be part of the disease. Becker Muscular Dystrophy (BMD) is considered to be a less severe form of DMD.
About World Duchenne Awareness Day
World Duchenne Awareness Day (WDAD) is an annual event held on September 7. WDAD is a global event aimed at raising awareness about Duchenne and Becker muscular dystrophy. The day promotes education, advocacy, and social inclusion initiatives to improve the quality of life for people living with dystrophinopathies. Secondly, it is providing a platform to share personal stories and experiences of those living with the disease.
Rome, 7 September 2024 – Today is World Duchenne Awareness Day 2024! With this year’s theme ‘Raise your voice for Duchenne’ we call on everyone to use your voice to raise awareness for people living with dystrophinopathies.
Recognition and blessings
This year marks an important milestone as the United Nations have officially designated September 7th as World Duchenne Awareness Day, to be observed annually from 2024 onward. This is the UN’s first formal recognition of a day dedicated to a rare disease. This emphasizes the global need for awareness and support for individuals living with dystrophinopathies, such as Duchenne muscular dystrophy (DMD).
Secondly, the European Parliament, under the patronage of President Roberta Metsola, has officially endorsed World Duchenne Awareness Day 2024. This underscores the importance of European solidarity and commitment to the rights, care, and inclusion of those affected by DMD. Additionally, Pope Francis has once again given his blessing for this day. He supports the global call for compassion, understanding, and advocacy for people living with rare diseases.
WDAD 2024 documentary
The World Duchenne Organization is launching an official documentary directed by Nicoletta Madia and produced by Arim Communication. This documentary brings to light the powerful stories of three individuals from Italy, Spain, and Brazil, each living with Duchenne muscular dystrophy. Through their experiences, the documentary highlights the themes of care, independence, support, inclusion, and education, showcasing the strength and resilience of those living with DMD.
Raise your voice for Duchenne
We urge everyone to watch and share this documentary widely to amplify these voices and raise global awareness about DMD. Together, we can create a world where people with Duchenne can live fully and in accordance with the rights they have.
World Duchenne Awareness Day (WDAD) raises global awareness about Duchenne and Becker muscular dystrophy (DMD and BMD). It takes place each year on September 7. The day promotes action through events and landmark lighting in red to support those affected. Established in 2013, WDAD raises awareness to improve the lives of the over 250,000 people worldwide living with these rare genetic disorders.
The World Duchenne Organization is grateful to receive a message from Pope Francis. This year, he is once again giving his blessing for World Duchenne Awareness Day.
Below, you can find the official message from Pope Francis. We are giving thanks to the President of ADM Argentina Santiago Ordóñez for this opportunity.
On World Duchenne Awareness Day for Duchenne and Becker Muscular Dystrophy, I send a greeting of hope to all the boys and young men affected by this disease. I pray for you and your families, so that you may never lose hope and the joy of living.
I congratulate and encourage patient organizations around the world for the service they provide advocating for the rights and well-being of people living with this disease.
The trailer for the World Duchenne Awareness Day 2024 documentary is now live. The documentary, titled ‘Raise your voice for Duchenne: the documentary’ tells the stories of people living with Duchenne throughout the world, and how they are raising their voice to live their best life possible.
Stay tuned for September 7 for the official launch of the documentary!
🇮🇹 Rome, Misha, Russian, discovers Italy and life with his big eyes, with a vitality that goes beyond Duchenne. 🇪🇸 Casar de Cáceres, Spain. Fernando builds his life by engaging in work and losing himself in new worlds and cultures by studying foreign languages. 🇧🇷 Rio de Janeiro, Bruno, a champion who, with his team, found his life passion and his path to happiness in wheelchair football.
Care, network, independence, support, inclusion, education are the words that link these stories. These are the words that tell us about the rights of people with Duchenne, how to live them fully and protect them.
Trailer of WDAD 2024 documentary
The documentary of World Duchenne Organization is directed by Nicoletta Madia and produced by Arim Communication.
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.
Amsterdam, 18 June 2024 — The European Parliament has officially granted its patronage to World Duchenne Awareness Day 2024, which will take place on 7 September 2024. This endorsement was granted by Roberta Metsola, President of the European Parliament.
We are honored to receive the patronage for World Duchenne Awareness Day 2024, and receiving recognition for this cornerstone event for the Duchenne community. This year’s theme is ‘Raise your voice for Duchenne‘.
The announcement is following the United Nations official designation of September 7th as World Duchenne Awareness Day. The resolution, adopted by consensus unanimously by all Member States, was the UN’s first formal acknowledgment of a day dedicated to a rare disease.
“This endorsement by the European Parliament is a huge boost for the visibility of Duchenne, and the World Duchenne Awareness Day”, says Elizabeth Vroom, chair of the World Duchenne Organization. “In addition to attracting media attention and public interest, hopefully it can gather more momentum for our ongoing advocacy efforts for policies that create better lives for people living with dystrophinopathies.”
The World Duchenne Organization would like to thank the European Parliament and in particular Mrs Metsola for this acknowledgement.
