Hospitals & Physicians

The Future of Healthcare

Medical information on the Internet is changing the nature of healthcare. When patients come to the office, they have often self-diagnosed. Even if it is not the correct diagnosis, they will arrive already having done some research. After patients leave the office, the first they will do is Google the diagnosis and treatment options to learn more. Unfortunately, much of what is out there is misinformation.

You Can Trust Fellow Patients

Misinformation on the internet is supplied by some companies looking to profit from the misfortune of others. They give away misinformation to sell e-books and herbal remedies. It's difficult to know who to trust. Thankfully, you can almost always trust a fellow patient. Patients might not be as knowledgeable as a physician, but fellow patients are not trying to sell anything.

Always Ask Your Physician

Our community policies are clear in communicating that we are here for support. Patients are encouraged to share their personal experiences and discuss the treatment options, but it's immediately made clear that we are not physicians. Always ask your physician before taking any action.

Better Treatment Options

Rare diseases are relegated to the bottom of the priority lists of pharmaceutical companies because there are simply not enough of us to warrant the investment required to develop new drug therapies and gene therapies. However, there is strength in numbers. A well-organized patient community can attract the kind of attention necessary to persuade companies to invest in R&D for treatment. As a physician, this is what you want, better treatment options for your patients.

Physician Recommendations

A member of one our communities, Alicia, was told that her condition was inoperable, but Alicia did not give up. She searched the internet, found one of our patient communities, and asked the community for help finding a surgeon who could help her. The community responded, the surgeon cured her, and today, she is alive and doing very well.

If you are a specialist in a rare disease, please contact the moderators of your patient community. Members are always looking for specialists who can help them.