OLD POST OF 2012
Liz and Natalie from CoRDS met with me a week or so ago and we discussed what I would like to share about myself and the Alliance for Cryoglobulinemia on their next tweet chat. After a quick half hour I realized that I didn't want the focus to be all on me. Our Rare Disease communities need support from one another, and questions answered about where to go next. I envision my voice as a voice for all our communities since each is so small in numbers. Collectively we are larger that the patients of AIDS and HIV put together. That's allot of people living in isolation without answers on this lonely road to a treatment. There is no cure! Some may find treatment and together we can make it happen.
We are meeting on tweetchat October 26th, Noon CST, to talk about the obsticales and challenges, our progress, and our accomplishments we face on our journey.
Please join Natalie, from CoRDS, myself and others from our Rare Disease communities in hopes to create a united force to raise awareness for us the patients, advocates and communiites.
This online Twitter chat hosted by Wego Health will take place this Friday worldwide at 2pm-3pm Eastern Time in this online chat room using the hashtag #HaRoundtable ~> Chat Here!