These are common feelings which have been expressed to me by patients with sarcoma whom I have seen in our multidisciplinary practice at the Dana-Farber Cancer Institute. One patient said it well, expressing his concerns over the hurdles to getting reliable information anywhere on sarcoma management:

"Having a sarcoma and going to my local doctor was like having a foreign car and taking it to an mechanic who only knows how to fix Fords and Chevys"

I hear this kind of thing a lot in my practice and I feel that there remains an important unmet medical need: to provide easily accessible information regarding sarcomas to patients, and to ensure that this information is understandable, reliable, accurate, and unbiased.

Internet technology offers access, but often at the expense of reliability and accuracy, which are often questionable for Internet-based sources. Commercial interests abound, and it can be difficult to separate biased advertising from valid news. Even web sites based at legitimate medical "centers of excellence" can be problematic, since these sites often reflect a powerful institutional bias, frequently failing to mention other options for care outside of a single institution. How can sarcoma patients (and their concerned friends and family members) wade through the unorganized morass of the Internet to obtain useful, evidence-based, reasonable information to help them deal with their disease?  Also, it is important to recognize that health care professionals who have not taken a special interest in sarcomas often feel out of their element when caring for a patient with sarcoma. The need for information directed at non-sarcoma-specialist health care providers is different from that of the information needs of the lay public, but the need is no less pressing and it is very real.

Sarcoma.Net was founded to help patients, their loved ones, and health care professionals access sarcoma-specific information that will be understandable, useful, fair, and unbiased. At Sarcoma.Net, we hope to develop a communication framework that will allow us all to tackle the problems of sarcomas, whether these problems are personal or professional, medical or surgical, biological or psychological.

To do this in an unbiased way is a challenge. Sarcomas are rare diseases, occurring in the USA population in only 8,000 new patients each year. Traditionally, it has been difficult to learn as much as we would like about sarcomas due to the small numbers of patients and the wide diversity of the different types of sarcomas. We all know that controversy reigns in the absence of data. There are often widely divergent opinions about how to manage a sarcoma in any individual. This can lead to confusion for the patient and increases anxiety at a time that is already distressing for the patient and family. In this era of modern communications technology, we should be able to do better than that.

In the best of all possible worlds, Sarcoma.Net may help us all to mobilize resources so that more answers will be obtained from better quality research in this field. While building toward that goal, we can all share the information we know in a fair and open manner. We can also discuss new opportunities in research and move towards disseminating accurate reports of new work in a useful way.

To achieve these goals will require more than the input of a single physician with a specialty interest in sarcomas. We at Sarcoma.Net invite participation from those who are interested in working to accomplish these goals. Together, we believe that we can make a difference in this field. We can move the field forward so that we will be able to offer more effective and safer treatments to patients, better support to their friends and families, and better answers to all of us as we solve the mysteries of this set of rare diseases known as "sarcomas."

Together, we can replace confusion with clarity, isolation with connectedness, helplessness with empowerment, and despair with hope.

Thank you for taking the time to read this. We at Sarcoma.Net look forward to hearing your comments and working with you in the coming months and years ahead.