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FARAFARA Cure FA

FA Hangouts - February 2016

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 fahangouts@gmail.com to sign up or ask questions. 

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!

hangoutsteam

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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