An online network for sufferers of inflammatory bowel disease suggests a new way of treating chronic disease, letting patients collaborate with doctors in collecting data and suggesting ideas for treating their condition.

It's not always easy to get access to your medical records - important info for rare disease patients.

This family had located some 500 people with Moebius around the world and all of them heard for the first time that day that they could live a normal life span.

Do you have any say over what’s in your medical records? Not really. The Health Insurance Portability and Accountability Act of 1996 gave patients the right to order copies of their medical records and enabled them to see the originals in the doctor’s office under most circumstances. It did not, however, give patients ownership of those records—your doctor or the hospital owns the file. You can try to persuade your physician not to write something in your chart, but the decision is ultimately hers, subject to legal requirements like the one included in the Virginia Senate bill.

Excerpt from "Telegenetics: The next phase in the provision of genetics services?"

If you have an implanted medical device that can collect data in your body, who owns that information? There doesn't appear to be a clear answer to the question. Brooke speaks to Hugo Campos, a patient advocate and founder of the ICD User Group, about his unsuccessful attempt to obtain the data collected by his own implanted defibrillator.