World FSHD Day – June 20, 2026

World FSHD Day, a global movement to raise awareness of FSHD, occurs on June 20. From orange slice selfies and proclamations to lit up buildings, World FSHD Day brings together our international community of advocates

2026 Photo Albums

View photos collected by the FSHD Society and the FSHD World Alliance on their respective webpages. Albums will begin populating the week of June 20th as photos are submitted and gathered.

---

Events & Media Coverage

Are you lighting up a building or landmark or hosting an event? Make sure your event and advocacy gets recorded. Please reach out to Beth Johnston or An Sasala to make sure we add your information to the blog.

---

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

---

You can also view our Instagram reel (and story highlights) which collect images, video, and experiences from more than 50 organizations and folks living with FSHD.