Social Networking for Patients

Whenever I talk about social networking with physicians, my ideas are met with massive scepticism. “Why would we encourage students to participate in such an antisocial medium?” is the most common response. But when I open the topic of people who are isolated in their homes because of personal or family illness, the lights go on in people’s eyes. The following are examples of some of these networks:
Interactive Autism
IAN, the Interactive Autism Network, is an innovative online project designed to accelerate the pace of autism research by linking researchers and families. Anyone impacted by an Autism Spectrum Disorder (ASD) can become part of IAN’s online community to stay informed about autism research, provide feedback, and make their voices heard.
Although primarily about research, it provides links to articles, upcoming events, news and discussion opportunities.
My Care Community
My Care Community is for the live-in caregivers of chronically ill people. CareCommunity gives you the following.
* Expert information.
* Access to a community of caregivers.
* A “Personal Community” page to help you share caregiving with friends and family members.
Patients Like Me
Communities for ALS, Hiv, MS, Parkinson’s and mood disorders. Founded in 2004 by three MIT engineers whose collective experience spans from running the world’s only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig’s disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We’re committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.
Webtribes
Webtribe is a network of communities that include addictions, anxiety, depression, hiv/aids and ocd.
The Wellness Community
Cancer support, education and hope for patients and families.
Group Loop
This is a safe place for teens with cancer that is a subgroup of the wellness community.
Starbright World
A site for chronically ill, hospitalized teens setup by the Starlight Foundation. The Toronto Hospital for Sick Children is a participant.
The network offers videoconferencing, private and secure access to almost 600 web sites, 150 games and activities, chat rooms, bulletin boards, e-mail and instant messaging.
The “Find A Friend” program lets children search for other kids with similar interests, hobbies and illnesses. They can even search specifically for a certain age range. The feature encourages kids to communicate and socialize with each other.
A study conducted at the Mount Sinai Medical Center in New York found that children experienced less pain and anxiety while engaged in Starbright World than when engaged in other recreational activities.

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