While the shared experience is very helpful, it’s important to remember the advice is coming from our fellow patients and caregivers, not professionals.
ACOR (American Cancer Online Resources)
This is an incredibly supportive and knowledgeable group of fellow CLL patients and caregivers. GrannyBarb Lackritz pioneered this online CLL list in 1996 and her original CLL List continues to support patient information and advocacy.
Start here to log in: http://www.acor.org/listservs/join/39
The CLL ACOR group has put together a list of CLL experts from around the world. While it, like any similar list including ours, needs to be constantly updated and neither we nor they can swear to the reliability of the information, it is an excellent place to start your search for a CLL expert as part of your team.
Chris Dwyer has built a site full of solid information for both newbies and experienced patients, even if you are not Canadian. Beautiful photos too.
A patient forum that provides a great balance of knowledge and support, and the format makes it easy to follow specific areas of interest.
Chronic Lymphocytic Leukaemia Support Association (CLLSA) has an active patient forum and good broad information. Based in the UK, but open to all.
CLLSA/Health Unlocked Forum
CLL / SLL Group
A strong and supportive, moderated email group for sharing experiences and helpful advice. Members have access to a comprehensive wiki of CLL links, videos by experts and scientific research. The forum is punctuated by the clarifying and valuable input of Dr. Richard Furman, a CLL expert.
Even if it’s a bit out of date, this is the best source for basic, well-explained CLL information (written by Chaya Venkat).
CLL Topics Updates
This is the follow-up to CLL Topics with the same clear writing covering important material until Chaya’s retirement in June 2013.
Dr. Sharman’s CLL & Lymphoma Blog
Dr. Jeff Sharman is a true CLL expert and it is worth reading all his thoughtful and well-referenced posts on CLL.
Leukemia and Lymphoma Society
LLS offers sound and credible basic information on CLL.
Living with CLL
This unique site offers CLL patients’ stories.
This is an LLS sponsored community that is accelerating promising research and improving the lives of patients and caregivers by seeking answers, sharing wisdom and driving change.
The Lymphoma Research Foundation (LRF) offers a good basic online overview. Their free booklet is well worth reading.
Lymphoma Canada provides, at no cost and in both official languages: electronic and print materials on the Hodgkin lymphoma, non-Hodgkin lymphoma and CLL, peer and caregiver support groups, educational forums and advocacy on behalf of patients. Lymphoma Canada also funds Canadian research.
Mutations of Mortality
This inactive blog is an archive the wonderful personal and educational posts by the late Dr. Terry Hamblin, a kind and wise CLL specialist who contributed greatly to our understanding of CLL and was exceedingly generous with his advice.
National Comprehensive Cancer Network
NCCN publishes helpful guidelines for doctors and patients about how to best handle a particular cancer including CLL/SLL. Like many such guidelines, these are good when they are first assembled, but by the time they are published can be out of date especially with a disease such as CLL where treatment is changing so quickly. Nevertheless, there is some excellent basic information and is a good resources to develop familiarity with CLL and its management.
OncLive Chronic Lymphocytic Leukemia
OncLive is an online publication of Intellisphere, a division of MJH Associates, a for-profit healthcare communications company. Their CLL page includes video discussions among the top CLL clinical specialists and researchers and is intended for hematologists. It is chock full of valuable information for the more sophisticated patient, but would be hard slogging for most newbies.
Though not CLL specific, PAN Foundation is “dedicated to providing underinsured patients with financial assistance through more than 50 disease-specific funds” that helps with the cost of therapies.
Patients Against Lymphoma
Providing evidence-based information on lymphoma and CLL focused on informed consideration of trials, independent of health industry funding..
Patient Power is a for-profit patient education website that is led by friend and fellow CLL patient and advocate, Andrew Schorr, and offers instructive videos and more on many health topics including CLL.