Sources of Additional Information on CLL

There is much information on the internet on the subject of CLL. However when patients are first diagnosed it is often difficult to know where to turn for information that is reliable and up-to date.  One of the first tasks of the CLL Support Association has been to produce this comprehensive and up-to-date listing of all of the internet sources of information that we as patients have found useful.  

CLLSA is not responsible for information on other internet sites. As with any site, including ours, be a discerning reader- think about what you read from your own health and financial point of view.

Those that are listed in red are of special interest.

CLL DISCUSSION GROUPS / membership only (internet access)

http://www.acor.org   This website is for the association of cancer online resources. This organization has many cancer groups; the international CLL group has well over 2,000 members, some of them very distinguished professors and doctors. This is a place in which we as CLL patients not only get support but we can also learn from other patient’s experiences.

http://health.groups.yahoo.com/group/CLLSLL/   This is an online discussion group that is smaller than the acor.org one but with a focus on CLL educational subjects that are often discussed and members are very helpful in exchanging experiences. The group also has a medical advisor, Dr. R. Furman, and a website, www.cllinfogroup.org

http://groups.yahoo.com/group/CLLResearch   This list is administered by a CLL patient, it is a fountain of knowledge full of medical research papers which are all very scientific and although some of the terminology is difficult to absorb in the early stages once one becomes familiar with the scientific vocabulary the information on this list is invaluable. It keeps us informed of all the CLL research which is done throughout the world.

http://leukemia-lymphoma.org   American website of The Leukemia and Lymphoma Society has a discussion forum called "living with CLL"  which is a friendly forum. The society has a very large body of information on leukemia and lymphoma including CLL.

INTERNATIONAL CLL PATIENT INFORMATION

http://patientdatabases.org   The CLL patient database  is a secure, patient run registry with international participation. It records personal profile data, date of birth, date of diagnosis, and US Census markers such as age, sex, race, ethnicity, and education level. A second part of the CLL patient database records CBC blood data reports by date and the date and type of treatment initiated. Registrants can print out the latter on a spreadsheet for distribution to their doctors and for their own use.

http://www.clltopics.org    This is one of the best websites for CLL patients on the web, things are explained in a way that is very easily understood to a patient who is newly diagnosed and the whole science of the disease sounds so complicated. The owner of the site Chaya Venkat also has a new site called CLL Topics Updates http://updates.clltopics.org/ . CLL Topics website and her more recent Updates site are entirely free of charge; CLL Topics is a 100% volunteer based effort with no financial ties or conflicts of interest

http://www.cllfoundation.org   The website of the American CLL Foundation, established by CLL patients to raise funds for research.

CLL PATIENTS' WEBSITES

http://www.mccune.cc/CLL.htm   A very interesting site by Tom Mccune.

http://www.healthtalk.com/chroniclymphocyticleukemia   Run by a CLL patient from Seattle, "healthtalk" conducts webcast interviews with specialist doctors.

UK CANCER AND LEUKAEMIA ORGANISATIONS

http://www.leukaemiacare.org.uk    This website is very good, it offers care and support in your local area if needed. There is lots of useful information and you can also become a member and post to the message board where you will find likeminded people and lots of good advice and information. This site also sends out a bumper CLL pack to patients with all of the up to date information and everything a new patient would want to know.

http://www.patient.co.uk    This website is a wealth of comprehensive information on all aspects of health and disease. It has a very clear text concerning CLL and is highly recommended to the newly diagnosed patient.

http://www.cancerhelp.org.uk    The information website from Cancer Research UK. This website is probably best for the newly diagnosed, it is very clear and easy to understand without being too technical.

http://www.nice.org.uk    NICE (National Institute for Clinical Excellence) is the independent organization responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health in the UK.

http://www.beatbloodcancers.org    The website of the Leukaemia & Lymphoma Research Fund. There are some useful information sources on this website.

http://www.ncrn.org.uk    The National Cancer Research Network, here you will find lots of technical information about UK research and clinical trials.

http://www.anthonynolan.org.uk    The official site of the Anthony Nolan Trust, the UK's largest stem cell and bone marrow register. This site is informative and useful. 

http://www.royalmarsden.org    The website of The Royal Marsden hospital in London which was the first hospital in the world to be devoted exclusively to diagnosis and treatment of cancer, it has an international reputation of it's treatment and care of patients with cancer. You can find some information about CLL and the CLL doctors who work at the Royal Marsden.

USA CANCER CENTRES AND CLL SPECIALISTS

http://www.mdanderson.org    The website of The University of Texas MD Anderson Cancer Center. Here you will find some information on CLL and information on the CLL specialists who work at MD Anderson including Doctor Michael Keating who is thought to be one of the world's leading CLL experts.

http://www.mayo.edu    The website of the Mayo Clinic in Rochester, Minnesota, USA, where there are current CLL trials going on led by Doctor John Byrd who is also a leading CLL expert. The Mayo Clinic has done a lot of research into CLL. It has also done research on EGCG which is the component in green tea thought to be of some benefit to CLL patients.

http://www.dana-farber.org    Website for the Dana Farber Cancer Institute in Boston, USA.

http://www.hopkinshospital.org    The website of Johns Hopkins hospital in Baltimore, Maryland, USA. Here they have the Sidney Kimmel comprehensive cancer center. You can get some information about CLL and their doctors here.

http://www.cllglobal.org    The website of the CLL Global Research Foundation, which was founded by Doctor Michael Keating of MD Anderson in Texas, USA.

http://www.mskcc.org    The website of Memorial Sloan-Kettering cancer center in New York, USA. There is some information about CLL on this site as well as information about their doctors.

http://www.ucsd.edu   Listing of "CLL Consortium" hospitals and doctors. The Consortium's particular focus is research.

MEDICAL DICTIONARIES, ENCYCLOPAEDIAS AND DRUG INFORMATION

http://www.medscape.com    An American website which is like a medical directory, it has lots of information on all manner of issues from types of cancer to types of drugs.

http://www.nlm.nih.gov/medlineplus/mplusdictionary.html   Medical dictionary.

http://www.medifocus.com   Medical information site.

COMPLEMENTARY, INTEGRATED and ALTERNATIVE MEDICINE

 http://www.bristolcancerhelp.org/    link will now direct you to the Penny Brohn Cancer Care

http://www.pennybrohncancercare.org/   The Penny Brohn Cancer Care is the UK's leading holistic cancer charity that has pioneered the Bristol Approach to cancer care, for people with cancer and those close to them. This Approach works hand-in-hand with medical treatment, providing a unique combination of physical, emotional and spiritual support using complementary therapies and self-help techniques, including practical advice on nutrition.

http://www.gerson.org   A nutrition detox based cancer therapy.

http://www.gersonsupportgroup.org.uk

http://www.canceraction.org.gg    Orthomolecular oncology, Michael Gearin-Tosh’s medical records can be seen on this website.

http://www.bettykamen.com   Ideas to improve your well-being.

OTHER CANCER INFORMATION ORGANIZATIONS - US Based

http://www.cancerdecisions.com/     Ralph W. Moss, PhD has a weekly newsletter with information about cancers, he reports on non-toxic treatments as well as toxic/chemo' treatments. His website is very informative and his newsletter is always interesting to read

http://www.jco.org    The website of the Journal of Clinical Oncology which is the official journal of the American society of clinical oncology. You can get access to a range of articles about CLL although you may have to pay for some of the articles.

http://www.vitaloptions.org    An American website for Vital Options International Telesupport Cancer Network, a cancer communications, support and advocacy organization. They have a good section on support for young adults with cancer.

http://www.cureforcll.org    An American website involved in fundraising and advocacy. Contains some useful information.

http://www.asheducationbook.org    The website for the American Society of Haematology Education Book, where you can get access to many articles concerning CLL.

http://www.hematology.org    The website of the American Society of Haematology which is the world's largest professional society concerned with the causes and treatments of blood disorders.

http://www.bloodjournal.org    The website of blood which is the journal of the American Society of Haematology. You can access many articles and papers about CLL and research into CLL.

http://www.medhelp.org/   Medical information centre for patients.

http://www.labtestsonline.org/   Clinical lab testing.

http://www.lymphomainfo.net/tests/bloodcounts.html   Lymphoma information network.

OTHER CANCER INFORMATION ORGANISATIONS - UK BASED

http://www.expertpatients.nhs.uk/   This is the  NHS expert patients site. It is not just about CLL but it could be useful for some people.

http://www.bcshguidelines.com    This website provides access to BCSH (British Committee for Standards in Haematology) guidelines and information on work in progress.

http://www.b-s-h.org.uk    The website for the British Society for Haematology. It is the main haematology society in the United Kingdom.

http://www.lookgoodfeelbetter.co.uk   The Look Good Feel Better Programme is a free cancer support service for women living with cancer. Groups of up to ten patients are invited to attend a beauty workshop where they receive professional advice and guidance on how to cope with emotional and appearance-related side effects of their treatments.  

http://www.lymphomas.org.uk CLL is technically a liquid lymphoma, so the Lymphoma Association has relevance to us as patients.

http://www.macmillan.org.uk/  Care and advice on both everyday financial and other needs and cancer specific help.

http://www.medicalert.org.uk    An emergency medical information service providing identification bracelets/necklaces, and 24 hour accessible computerized medical files to medical personnel.

Questions or problems regarding this web site should be directed to the CLL Support Association.
Copyright 2010 © CLL Support Association. All rights reserved. Registered Charity: 1113588