Hope everybody is well.
Would any of you be interesting in being a part of a twitter chat? It could be a fun way to learn about other communities on BF, share your experiences with a rare disease, tell your story and gain exposure for BF and all of our amazing communities.
Here are the questions we are thinking about using for the first chat:
1) How did you find BF?
2) How has Ben's Friends and social media improved your life?
3) What rare disease do you have?
4) how long did it take for u get the proper diagnosis?
5) How has your rare disease impacted your life?
6) What could be done better raise awareness for folks w/rare diseases?
7) What advice would you give folks recently diagnosed w/a rare disease?
8) What advice would you give to friends and family members that have a relative or know somebody with a rare disease?
We would use the site www.tweetchat.com for the chat.
@bensfriends Twitter Chat this Thursday December 13, 2012 2PM EST/11AM PST / 7PM UK Time Use #bensfriends to follow chat
Next Twitter Chat Tomorrow Sunday December 30, 2012 1PM EST/10AM PST / 6PM UK Time
When you join you post questions and put #bensfriends at end of post and it will show up on www.tweetchat.com/#bensfriends when you join chat