Thursday, July 12, 2007

As ACC patients, we have clout!

If you have been diagnosed with ACC, I sure hope you have joined both the Rare Cancer Alliance Forum (http://www.rare-cancer.org/) and the Adenoid Cystic Carcinoma Organization International (http://www.accoi.org/), so you can get connected with the few of us out in the world. Connecting is where we get our strength to make a difference, as reported today (actually tomorrow, July 13, 2007) in The Wall Street Journal's column, The Informed Patient: The growing clout of online patient groups http://online.wsj.com/article/SB118168968368633094.html?mod=googlenews_wsj

My one hope is that those researching this rare cancer have the sense to connect to these online communities for information. Might be time for the Ninja Librarian to start sending emails to the ACC experts, letting them know about our existence... stay tuned!

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