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By Stacia Wagner
Thursday, September 1, 2011

The Wall Street Journal  article When Patients Band Together, Doctors Notice on Tuesday, August 20thdiscussed the potential role social networks may have in linking patients of rare diseases who are looking for improved research and cures to researchers who are looking for patients. Despite so many technological advances, in many ways healthcare and research are still fragmented. This is especially true for diseases where the numbers diagnosed each year are small. The article talks about a group of women diagnosed with a rare heart disease who came together online. One of the women took the stories from the online group to her doctor and asked him to consider a study. Mayo clinic was able to fill the study and gain information related to the heart disease. This is a great example of power in numbers!

Hospitals are not always able to share information, medical staff do not always know about open clinical trials or studies, and patients are not always able to link to others who have shared a similar diagnosis. This is especially true are disease communities such as the pediatric brain tumor community. I know many people utilize the yahoo groups for support and information. Hopefully CBTF will be able to create effective online communities which will provide support and promote medical research. Please share your online community experiences and suggestions with us.

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