Splashes of orange worldwide raise awareness on
World FSHD Day 2026
On 20 June, World FSHD Day united the global FSHD community – individuals living with FSHD, their families, friends and supporters, alongside researchers and clinicians – to celebrate resilience and raise awareness of FSHD.
Here is a whistle-stop tour of just some of the many activities organised across Europe to mark World FSHD Day: fundraising initiatives, educational campaigns, awareness-raising activities, community events, and media engagement – all helping to create an orange wave of awareness.
Read below and browse the photos capturing these moments here.
Launching a rock anthem: “Beat FSHD!” by the BEAT FSHD! Combo
We were proud to launch a catchy, clever and humorous new rock anthem, “Beat FSHD!”, for World FSHD Day – a call to action for global research, awareness and solidarity in the fight against FSHD.
The song, composed by Finnish musician and patient advocate Rami Jokinen, was performed in a rock band of which three members are living with neuromuscular conditions. It was launched in collaboration with FSHD Finland and the World FSHD Day movement and is resonating across social media channels, bringing the community together through music.
Sing. Clap. Stamp your feet. Rock on! And rise up for a cure for FSHD!
Orange Slice selfies and stories
A central campaign theme for 2026 was the Orange Slice Selfie, raising awareness of one of the most common symptoms of FSHD: weakness in the facial muscles, which can make smiling difficult.
Browse the many creative, colourful, and humorous orange slice selfies on Facebook and Instagram.
Illuminating monuments, buildings, and fountains in orange
Across Europe, monuments, buildings and landmarks were illuminated in orange to raise awareness about FSHD.
- Italy: Buildings and bridges across the country were lit up in orange, as explained to the public by patient advocate and member of FSHD Italia, Paola de Donato.
- Netherlands: Spierziekten Nederland announced that five cities across the country had buildings lit up, including the iconic Wereldmuseum of Rotterdam.
- Slovenia: Društvo distrofikov Slovenije organised the illumination of buildings and fountains.
- Spain: Thanks to FSHD Spain, 302 monuments and buildings were illuminated, viewable in this amazing gallery of photos.
- UK: FSHD UK held a community event together with the illumination of Newcastle bridge endorsed Prof. Giorgio Tasca from Newcastle University.
Community-building get-togethers and events
The global FSHD community organised a wide range of activities, including congresses, hikes, information booths, and social gatherings.
- Italy: An educational congress took place in Rome, 12° Giornata d’incontro FSHD 2026, with presentations from patients and scientists alike, available on replay.
- Netherlands: Radboud University Medical Center held a swimming and walking event with its FSHD centre of expertise.
- Spain: FSHD Spain organised an accessible hike and day in nature in the splendid Hoces del Río Riaza Natural Park in Segovia.
- UK: Muscular Dystrophy UK published a testimonial from Zoe, who hosted a picnic in the park to raise awareness on World FSHD Day.
FSHD in the news, on the radio, and on the bus
World FSHD Day also generated valuable media coverage across Europe, helping to increase public understanding of the condition.
- Finland: National media published patient stories highlighting the realities of living with FSHD.
- France: AFM Téléthon created a striking poster featuring patient profiles and testimonies.
- Italy: Coverage appeared in leading newspapers, including La Repubblica and Corriere della Sera Roma.
- Netherlands: Radboud University Medical Center published highlighting European-wide collaborations, such as PaLaDIn (Patient Lifestyle and Disease Data Interactium) and Project Mercury.
- Spain: FSHD Spain arranged for Maria Peláez to share her lived experience on Valencia radio channel: Cadena SER and arranged advertisements on the public transport (buses) in two cities.
- UK: Founder, Chair and Trustee of FSHD UK, Raj Badiani, was interviewed on the radio talk show, FSHD Straight Talk with Tom Hollenback, episode 161, available on replay.
Thank you to you all!
A heartfelt thank you goes to World FSHD Alliance for leading World FSHD Day and providing the community with a handy, adaptable toolkit. Congratulations to our member associations and to many individuals to make this day such a success.
We look forward to ever growing awareness among the public and to more donations and funding reaching us: our patient organisations and to R&D to help find and test treatments for FSHD.
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.