The FARA Ambassador Program presents an FA Hangout talking about the National Organization of Rare Disorder’s motto: “Alone we are rare together we are strong.” We’ll talk about what it is like to have a rare disease, Friedreich’s Ataxia. What do we have in common with others with rare diseases (like taking a long time to be diagnosed)? What’s different? What does Rare Disease Day mean to you?
At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!
Every hangout is open to anyone with FA and a translator if needed.
Hangouts will be held Wednesday, February 24 and Thursday, February 25 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9 PM EST both days. More times will be added if needed. Email
Google (not us!) limits hangouts to 10 people. FA Hangouts do fill up. It is first come, first served. So the earlier you sign up, the more likely you are to get the date and time you want. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone.
An email will go out 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room a half hour early, but the topic conversations will begin at the top of the hour.
See you soon!