MYW2017 blog

Rare Disease Day aims to raise awareness around the world of rare diseases and their impact on patients' lives. To join these efforts, let's tell the world about FA! Here's an updated take on the Move Your Way for Rare Disease Day Campaign...

We're asking the FA community to submit a short (30 second) video clip showing how you move your way living with Friedreich's Ataxia

 Moving Your Way could be how you get around your home, your chosen exercise, or a social activity. Be creative. Start the video by saying "I Move My Way for Rare Disease Day by ______." Show your activity. Then conclude your video by saying "350 million people worldwide live with a rare disease and I'm one of them. Rare Disease Day is February 28. To learn more visit"

Please submit your videos to us via Dropbox by Monday, February 20.

These videos will be shared on FARA Facebook (be sure to follow!) beginning Wednesday, 2.22 - Tuesday, 2.28.

SHARE these videos and help us continue to increase awareness of Friedreich's Ataxia!

Questions? This email address is being protected from spambots. You need JavaScript enabled to view it.

Check out this year's Move Your Way introduction video for some examples. THANK YOU!

2017MYW intro

Rare Disease Day is a worldwide awareness effort to draw attention to all rare diseases. Together, rare diseases affect millions of people. Join the National Organization for Rare Disorders, the Friedreich's Ataxia Research Alliance (FARA) and other advocacy groups around the world to show the general public and decision-makers that more support is needed for rare diseases like Friedreich's Ataxia.

#RareDiseaseDay2017 #MoveYourWay4Rare #CureFA