World FSHD Day 2026: International Collaboration, Global Awareness
On June 20, World FSHD Day unites the entire FSHD community – individuals living with FSHD, their families, friends, and communities, and the research and clinical community – to celebrate resiliency and raise awareness about facioscapulohumeral muscular dystrophy (FSHD). A shared sense of purpose guides our work in 2026: together, we tell a collective story.
On June 20, we will share the details of events as they happen, adding photos when available, celebrating the advocacy and resilience of everyone living with FSHD and the support of their communities.
Click here to fill out the Event, Celebration, and Awareness Campaign Form to share the details of efforts in your country.
Orange Slice Selfies & Social Media Awareness
World FSHD Day is a great opportunity to raise awareness about FSHD. Sample posts and graphics can be found on our website. While you can share any kind of informational (or other) content, many folks post “orange slice selfies.”
Playing on the childhood snack of orange slice “smiles,” the Orange Slice Selfie Campaign raises awareness about the everyday effects of FSHD. On June 20th, you are encouraged to post selfies using orange slices in place of your smile.
When posting, please use the following hashtags, to make your posts easy to find:
#WorldFSHDDay, #FSHD, and #CureFSHD
Media Contacts
Oceania:
Lorel Colgin, FSHD Global, lorel@fshdglobal.org
Europe:
Miriam Long: World Alliance, mwlong@fshdworldalliance.org
Ria de Haas, FSHD Europe, Ria.deHaas@fshd-europe.info
Canada/US:
An Sasala, FSHD Society: an.sasala@fshdsociety.org
Latin America:
Rafael Colnago, Associação Brasileira de Facio-Escápulo-Umeral, rafael.colnago@abrafeu.org.br
About the World Alliance
The World FSHD Alliance unites representatives from over 30 countries working to find a cure for, and to provide support for individuals living with facioscapulohumeral muscular dystrophy (FSHD). It was established because, together, by sharing resources, strategy, and “speaking in one voice,” we can accomplish much more in education, support, and advocacy. The World Alliance’s initiatives include: World FSHD Day, an international day of awareness, celebrated on June 20; Project Mercury, a collaborative project between advocate and pharma to increase the number of qualified clinical trials, increasing patient engagement, and maximizing on limited resources; and quarterly meetings amongst member countries.