Celebrate World FSHD Day—June 20
A global moment of recognition and community
What is World FSHD Day?
World FSHD Day is held every year on 20 June. It is a global day of awareness dedicated to Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. On this day, people living with FSHD, their families, friends, and supporters around the world come together to increase understanding, share experiences, and help others learn about the condition.
Communities take part in a variety of activities. These can include sharing personal stories, posting orange slice selfies, lighting landmarks in orange, or gathering with others in person or online. It is a day for connection, visibility, and support across countries and cultures.
Why 20 June
The first World FSHD Day was celebrated in 2016. The date was chosen to honor the advocacy work of Marco and Sandro Biviano in Italy. Their efforts led to improved services for people living with FSHD in their region, and 20 June was recognized as FSHD Day in Italy. What began as a local milestone has grown into a global day of awareness and solidarity.
How you can take part?
Anyone can participate in World FSHD Day. Whether you live with FSHD, care for someone who does, work in research or healthcare, or simply want to show support, you are welcome to join in. A few ideas include:
- Take an orange slice selfie on 20 June and share it on social media with the hashtag #WorldFSHDDay. The orange slice is a simple, recognizable symbol of awareness.
- Update your social media profile image or cover photo to show support.
- Encourage a local building, monument, or community space to light up in orange.
- Join or organize a local gathering or virtual event.
- Use the images and sample messages from the World FSHD Day toolkit to help spread the word.
The role of the World FSHD Alliance
The World FSHD Alliance supports this global day of awareness by helping organizations, leaders, and advocates share resources, ideas, and activities that can be used in different countries. The aim is to create a shared sense of purpose and encourage participation through both local and global efforts.
Across the year, the Alliance works with partners to continue the spirit of World FSHD Day by strengthening community connections, encouraging collaboration, and supporting awareness efforts around the world.