CLLTopics.Org: A Model Patient Support/Patient Education Website

In all my web browsing, I have never run across a better website for educating patients in a particular disease, than the CLLTopics.org website.

From the primer on CLL provided:

Here is the scenario. You have just been diagnosed with this nasty stuff called CLL, probably following a routine blood test. After you got over the initial shock of it, you logged on the web, looking for information and support, and you found our site....

At this site you will find people who care, people who are well informed, who share information and feel they are stronger because they work together as a group for the common goal of improving therapy options for CLL patients. This is a strictly volunteer effort by people with no ties to the medical or pharmaceutical establishments.

We try to stay pretty much on topic in our discussions with not much chit chat or off-topic conversation. The bias is definitely towards patient empowerment, the latest developments, new clinical trials and the critical evaluation of the results of such trials. We also tend to be pretty hard nosed about the miracle cures, some touted in TV infomercials, that claim to cure everything except the condition of your wallet.

Below is a quick "cheat sheet" of stuff you probably need to know right away, as you begin to get your arms around this crisis in your health. As time goes on, you will learn more, and feel more confident in the choices you make. With the progress of the genomic revolution, the science of immunology and our understanding of CLL are changing so fast that many of the less informed oncologists and hematologists are getting left behind. No one has a higher stake in this matter than you do - it is your life, your body, your health . . . and so on. The site is geared toward giving the patient the facts he will need to fight his disease.

The home page itself is packed full of news, articles, case reports, and ancillary information. The site provides pages of resources--my favorite two are links to textbooks and references. These people are very serious about their topic, and provide an abundance of informational resources.

If you know anyone who is diagnosed with chronic lymphocytic leukemia (CLL), or any type of hematologic disease or immune dysfunction, for that matter--you would be doing them a favour by pointing them to this website, CLLTopics.Org. If you are a hematologist or oncologist yourself, or deal with either area of practise or research, you might visit the site to inform yourself on the type of information your patients have access to.

For an excellent background on white blood cell diseases from a pathologist, check out this website.