World Duchenne Organization

🧬 Did you know? Duchenne and Becker muscular dystrophy (DMD/BMD) are rare genetic diseases causing progressive muscle breakdown. The missing protein also has a function in the brain, so learning- and behavior issues can be part of the disease. People with DMD are missing muscle-protecting protein. This is due to a fault in the gene producing dystrophin. People living with BMD lower levels or a shorter version of this protein. 🎈 This September 7, help raise awareness for these two rare diseases, and create a better world for people living with DMD and BMD.

The July newsletter is now out, focusing on what you can do to raise awareness on World Duchenne Awareness Day! It contains: → Information about the theme → Logo's and visuals → WDAD press pack - 𝘢𝘷𝘢𝘪𝘭𝘢𝘣𝘭𝘦 𝘪𝘯 𝘮𝘢𝘯𝘺 𝘭𝘢𝘯𝘨𝘶𝘢𝘨𝘦𝘴 → Tips on how to illuminate a landmark → Guidance on how to organize an event or conference Not received? Click the link to access this edition, and subscribe to stay up to date on all things WDAD, including the upcoming 𝗪𝗗𝗔𝗗𝟮𝟬𝟮𝟰 𝗗𝗼𝗰𝘂𝗺𝗲𝗻𝘁𝗮𝗿𝘆! https://lnkd.in/eATka7Gs

This World Duchenne Awareness Day, which iconic landmark will you light up? Join the movement! Here are 5 tips (with a template!) on how to get started for #WDAD2024. Please head over to https://lnkd.in/ej7DSBaH 📸 Sagrada Família Nativity façade, Barcelona (Spain). Amazing work by Duchenne Parent Project España!

Show your solidarity for people living with Duchenne and Becker muscular dystrophy by sharing this support pledge. 👇 Let's create one strong and unified voice to raise awareness before, on, and after September 7! #WDAD2024 #EndDuchenne #DesafioDuchenne

🇧🇷 Our community manager NICOLETTA MADIA and the skilled arimvideo srl team are currently traveling in Brazil. Here, they are filming to promote inclusion and support for World Duchenne Awareness Day 2024. Stay tuned for September 7 and watch the beautiful experiences that are collected! #Duchenne #Inclusion #DisabilityRights

The European Medicines Agency recommends non-renewal of authorization of Duchenne muscular dystrophy medicine Translarna. Read the official news issued by the EMA below. https://lnkd.in/eTurEdpq

We are pleased to announce that the The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust in Oswestry, UK, has achieved accreditation under the Accredited Duchenne Centers (ADC) Program. With this, the center is the first in the UK to receive this recognition for pediatric and adult care in Duchenne Muscular Dystrophy (DMD). Led by Prof. Tracey Willis and Dr. Richa Kulshrestha, the center has demonstrated exceptional commitment to adhering to international guidelines and delivering comprehensive care. For more information, please visit: https://lnkd.in/erfFYMgi

🎈 The official 𝘀𝗼𝗰𝗶𝗮𝗹 𝗺𝗲𝗱𝗶𝗮 𝗯𝗮𝗻𝗻𝗲𝗿𝘀 for World Duchenne Awareness Day 2024 are now available. We invite everyone to update their profile with the high resolution images you can download at https://lnkd.in/eCCzmESE so we have one unified voice to raise awareness for people living with dystrophinopathies. 🎤

🎤 This year's World Duchenne Awareness Day theme is 𝗥𝗮𝗶𝘀𝗲 𝘆𝗼𝘂𝗿 𝘃𝗼𝗶𝗰𝗲 𝗳𝗼𝗿 𝗗𝘂𝗰𝗵𝗲𝗻𝗻𝗲. This 11th edition focuses on amplifying voices to advocates for the rights, inclusion and well-being of people living with dystrophinopathies. Join us September 7 for a more inclusive world! World Duchenne Organization will be launching a documentary showing the resilience and determination of the global Duchenne community. 👉 Please share the press release with your colleague healthcare professionals, policy makers, educators and more. Together we can create greater awareness, which is the first step to action. https://lnkd.in/dY942CAS

🎈 We're honored to announce that the European Parliament, led by President Roberta Metsola, has granted its patronage to World Duchenne Awareness Day 2024. This follows the United Nations's unanimous recognition of September 7 as World Duchenne Awareness Day. In addition to attracting media attention and public interest, this endorsement can help gather more momentum for European advocacy efforts for policies that create better lives for people living with dystrophinopathies. 🤝 We thank the European Parliament and Mrs. Metsola for this significant acknowledgment. https://lnkd.in/ezMzuuWk