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Rare Disease Community On MEDPEDIA Platform

A recent Mayo Clinic-hosted forum on innovation produced the recommendation to apply the "free" or open concept to health care, in forums called "collaborative care networks."  These networks - large databases, really - offer doctors, patients and researchers ways to enter, search and access a vast pool of clinical and anecdotal data unavailable to any one person or institution.

I don't usually reproduce press releases wholesale, but this RareSpace announcement from Medpedia seems to fit this innovative concept;

RareSpace Leverages Medpedia’s Technology Platform
SAN FRANCISCO, CA (June 29, 2010) –Medpedia today announces RareSpace, an online knowledge sharing platform designed in partnership with the R.A.R.E. Project and the Children’s Rare Disease Network to advance research and share information about the rare childhood diseases that affect 22.5 million American families. This resource is available now on Medpedia at
"RareSpace is a unique and valuable tool for families caring for children with rare diseases," says Jonathan Jacoby, CEO of the R.A.R.E Project. "With the help of, RareSpace will become a safe place to share important information aggregated from the rare disease community at large, which is vital to finding hope for children."

Parents, physicians, medical researchers, patients, advocates and others interested in rare diseases are encouraged to participate in discussions and share information about genetic diseases, innovations in research, standards of care, and best practices in treating rare diseases and disorders. RareSpace also includes translational research and discussions of possible cures for diseases. Medical professionals in RareSpace will answer questions about treatment, best practices, and how to best help these children and their families. Anyone with an interest in rare diseases is invited to join at

The Medpedia platform, which launched in February 2009, also includes a collaborative online medical encyclopedia, a Professional Network and Directory for health professionals and organizations, and Communities of Interest in which medical professionals and non-professionals can share information about medical conditions and treatments. The Medpedia platform also includes Medpedia Clinical Trials for pushing clinical trial information out to the Web in proper context; Medpedia Answers for asking and answering medical and health questions; Medpedia Alerts for real-time medical and health news alerts; and Medpedia News & Analysis for sharing medical news and commentary.

About the Children’s Rare Disease Network
The Children’s Rare Disease Network (CDRN) is a non-profit advocacy group committed to connecting, educating and empowering the rare disease community, providing a link between families impacted by rare disease.  The CDRN is a division of and developed by the
R.A.R.E. Project which exists to promote rare disease advocacy, research, and accelerated therapy development. For more information, visit

About Medpedia
Medpedia is an open platform connecting people and information to advance medicine. Medpedia is created in association with Harvard Medical School, the Stanford School of Medicine, The University of Michigan Medical School, the UC Berkeley School of Public Health, and leading health organizations around the world. For more information, visit


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