Thank you for helping us spread awareness about
FSH muscular dystrophy on Rare Disease Day!
Rare Disease Day occurs every year on the last day of February. On February 29th, we hope you will share your story on your social media platforms and that the resources here help you do so. Thank you for helping us all raise our collective voices on the 29th!
Please use the following tools to help guide your social media activity. Personalize and share your stories and experiences.
Show your support on Rare Disease Day
There are many ways you can raise your voice and join the chorus of FSHD Community members telling our story... Take a picture with hands up (similar to RDD logo); share videos found on our You Tube Channel; like, comment and share our posts on Facebook, Instagram and Twitter; update your Facebook cover and profile picture to show your support for Rare Disease Day; and share the images we have created along with your story!
Take action
- Connect online through one of our many community groups or social channels.
- Join an event. We have many local and regional events on our calendar.
- Stay informed by signing up for our contact registry. Never miss an important bit of news or information on research opportunities.
Twitter/X:
- Use the following hashtags: #RareDiseaseDay #FSHD #CureFSHD
- Tag @FSHDSociety in your tweets
- Use the Twitter images we've created to help tell the story (right click on the image to download)
- Use these sample tweets (personalize and edit, or feel free to copy and paste):
-- Rare is many. Rare is strong. Rare is proud. I am rare. #RareDiseaseDay #FSHD #CureFSHD
-- An estimated 1 in 8,000 individuals are affected with FSHD worldwide. No individual or family is immune. #RareDiseaseDay #FSHD #CureFSHD
-- Be a part of the army of activists participating this #RareDiseaseDay to raise awareness for #FSHD.
Instagram:
- Share FSHD Society’s Rare Disease Day posts to your stories
- Like & comment on FSHD Society’s Rare Disease Day posts
- Share your FSHD story and use the following hashtags on your posts and stories: #RareDiseaseDay #FSHD #CureFSHD
- Tag @FSHDSociety in your posts and stories
- Use the images we've provided in your Instagram feed posts and Instagram stories (right click on the image to download)
Facebook:
- Like, comment, and share FSHD Society’s Rare Disease Day posts
- Tag FSHD Society in your posts
- Use a Rare Disease Day frame on your profile photo
- Use our created posts on your feed or stories (right click on the image to download)
- Share your story! Personalize and edit these sample social media posts:
Alone we are RARE. Together we are STRONG.
Social Media Graphics
Profile Photo Frames
There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, each supported by family, friends and a team of care partners that make up the rare disease community. Approximately one million of those are affected with FSHD.
Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.
An estimated 72% of rare diseases are genetic. FSHD is a genetic disorder, but 30% of new FSHD patients have no prior family history.
Raising awareness for rare diseases is an important step in the journey. But one day is not enough, we need to continue to share our experiences to educate others. #CureFSHD #RareDiseaseDay
STAY ENGAGED
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