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 28th, 2021 we hope you will share your story on your social media platforms and that the resources here help you do so. We will be sharing information during the two weeks leading up to this day, and help us all raise our collective voice on the 28th.
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 FHSD 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!
- Connect online through one of the many Facebook groups or on our official social media channels.
- Join an event. We have many virtual events on our events page!
- Stay informed by signing up for email updates, following our blog and subscribing to the Advocate.
- 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.
- 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)
- Like, comment, and share FSHD Society’s Rare Disease Day posts
- Tag FSHD Society in your posts
- Add a Facebook Profile Picture Frame on February 28th:
- - I support rare Facebook frame
- - I love someone who is rare Facebook frame
- - I am rare Facebook frame
- 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.
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 carers that make up the rare disease community. Approximately 870,000 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 #VOPF #RareDiseaseDay
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