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Francine Hardaway: Other Sites That Share Stories

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The panel on Social Media for Patients at Health 2.0 is awesome. There are already many good Web2.0 resources out there for patients. Here are some of them.

Diabetes Mine is an advocacy blog for people with diabetes.

Sophia’s Garden is a healing community for parents with chronically ill children, and is a virtual community for parents of children with serious illnesses. When their daughter was diagnosed with a terminal illness, the founders developed the tools to collaborate and communicate with their friends, helpers, and medical team. Because there no tools, they developed HECO, a virtual world that functions just like the real world, in which families can collaborate across time and space. HECO gives families a survival kit and every family helps build it.

Each member of the community has an avatar, and can navigate his needs in a secure environment. The community collaborates through voice chat, VOIP.

Daily Strength is a comprehensive patient site with 600 interactive patient communities talking about specific conditions. Most were created from personal need, such as support with betreavement, bed rest, etc. Although it was created as an anonymouse community, many people just come on and share their truth.

Inspire.com. Community site for caregivers and patients. Has alliances with large partners in heart and lung disease.partnerships with large providers. Its founders have discovered it is possible to join multiple groups within a larger umbrella providing support for people who may have more than one condition.

PatientsLikeMe provides simple tools to track relevant disease information, outcomes, and treatments in the ALS, Parkinson’s and MS communities. It was started by two guys whose brother has ALS, and gives very detailed information about his condition.

Patients can Gantt chart all the treatments and interventions they are trying to manage their disease, including prayer! This is teaching patients some real cause and effect about the long term progression of a disease.

Patients make treatment decisions based on this information.

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