Liz and Natalie from CoRDS met with me a week or so ago to discuss what I would like to share about myself and the Alliance for Cryoglobulinemia on their next Tweet Chat as their guest. 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 but we need your voice as well. Collectively we are larger than the patients of AIDS and HIV put together. That's allot of people living in isolation without answers on this sometimes lonely road to a treatment, a friendship, a community.
CoRDS is hosting our Tweet chat October 26th, Noon CST, to talk about our obstacles and challenges, our progress, and our accomplishments that we face everyday 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.
If you've never joined before, just go to http://tweetchat.com/ and add the hashtag #CoRDSChat. It's easy to follow along and Natalie will give you directions on how to RT, pause and add comments. It's just like twitter so share, share, share. Be sure to follow @SanfordCords on twitter.
Please feel free to email me at firstname.lastname@example.org if you need any help with the Tweet Chat set up. Arrive 5 minutes early on http://tweetchat.com/ to sign in.
See you there. Marianne-Laughingnana Cares - I Care Because I'm Rare