Together, we make FSHD visible
Every year on 20 June, the global FSHD community comes together to shine a light on facioscapulohumeral muscular dystrophy (FSHD), one of the most common forms of muscular dystrophy. World FSHD Day is a moment of connection, visibility, and hope. Across Europe and around the world, people living with FSHD, their families and friends, researchers, healthcare professionals, and patient organizations unite to raise awareness and build understanding.
World FSHD Day is about more than awareness alone. It is about standing together, sharing stories, and showing that no one faces FSHD alone. Every action, big or small, helps bring FSHD out of the shadows and into the public eye.
Everyone can take part
Whether you are living with FSHD, support someone who is, work in research or healthcare, or simply want to make a difference, you are invited to join World FSHD Day.
There are many simple and powerful ways to get involved; whether as a patient organization, together with friends or as an individual. Every contribution matters. By taking part, sharing experiences, or supporting each other, we can create meaningful impact and drive positive change, step by step.
Social media
Change your social media profile or cover photo to show your support and start conversations. Make sure you always use the hashtag #worldfshdday. The toolkit offers inspiration and practical examples for your posts, including sample text.
Orange slice selfie – because awareness starts with a smile
On 20 June, take an orange slice selfie and share it on your social media using #worldfshdday.
A smile connects, but for more than 1 million people with FSHD, facial muscle weakness makes smiling difficult. The orange slice selfie highlights the everyday impact of FSHD and helps make it visible.
Lighting up buildings in orange makes FSHD impossible to ignore
This is a visible way to raise awareness for FSHD. By illuminating well known buildings, bridges or public spaces in the global FSHD color, we spark public attention, start conversations and show solidarity with everyone affected by FSHD.
Get started with the template letter, make it your own, and help turn your city orange! Capture the moment and share photos of your orange landmark on social media using #worldfshdday.
Local event or (virtual) gathering
Join or organize a local event or virtual gathering to bring the community together, near and far. Whether it’s a BBQ, a picnic in the park or a bonfire evening, every moment shared helps raise awareness and strengthen connection. Share your photos and don’t forget to use #worldfshdday.
Toolkit
Use the World FSHD Day toolkit, with ready-to-use visuals and messages, to spread the word easily and effectively.
Why World FSHD Day matters
World FSHD Day began in 2016 and is rooted in a story that continues to inspire progress today. The date, 20 June, honors the advocacy of Marco and Sandro Biviano in Italy. Their sustained efforts led to better services and recognition for people living with FSHD in their region, demonstrating that patient voices can drive real change, locally and beyond.
Awareness is the foundation for progress. It fuels investment in research, accelerates the development of treatments, and strengthens collaboration between researchers, clinicians, and patient organizations. Visibility also matters in policy. Greater public and political awareness helps ensure that FSHD is recognized within healthcare systems, rare disease strategies, and disability policies, improving access to care and support.
World FSHD Day also amplifies international collaboration. No single country can address FSHD alone. By uniting the global FSHD community, this day strengthens shared advocacy, promotes harmonized standards of care, and supports coordinated research efforts that benefit everyone affected by FSHD.