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Support Groups

 

Here are a few online volunteer groups that assist patients and families dealing with CLL and related diseases. These support groups are a godsend to the newly diagnosed patient or family member and a source of continuing strength for the battle-weary.

The ACOR (Association of Cancer On-line Resources) CLL List  is like a cyber village, where you go to meet friends, exchange anecdotal information, welcome newcomers, provide solace and comfort to those in need, and raise general awareness of CLL-related issues. There is a tremendous amount of information available in the List’s archives. The membership is large and varied and discussions sometimes wander far afield. 
The web address is: http://listserv.acor.org/archives/cll.html

The Leukemia and Lymphoma Society provides disease information and patient services. It grew out of a volunteer effort launched in 1944 by a patient's family. Today, the Society is supported by annual donations of over $150 million, a professional staff and many volunteers. It supports a wide array of research and scholarship in the search for cures for leukemia, lymphoma, Hodgkin's disease and myeloma, and is dedicated to improve the quality of life of patients and their families. 
The web address is: http://www.lls.org/hm_lls

The CLL Research Discussion Group is hosted on Yahoo! Groups. Posts are generally restricted to citations of research papers or abstracts published in various medical journals, or news accounts of significant interest to the CLL community. Members have access to the archives and Yahoo's search engine makes it easy to look for specific posts. 
The web address is: http://groups.yahoo.com/group/CLLResearch/

Healthtalk - CLL Education Network.   Healthtalk is a source for newsletters and multimedia presentations on a number of chronic diseases and conditions. The CLL Education Network presents current information in an easily accessible form through interactive webcasts of interviews with experts in the field. Healthtalk aims "to provide not only the latest information but also emotional support for your chronic health concerns." The website's goal is summed up in its subtitle, "Real people connecting with the experts for better health". 
The url is: http://www.healthtalk.com/cllen/index.html 

Lymphoma Research Foundation (LRF) is the nation's largest lymphoma-focused voluntary health organization devoted exclusively to funding research to cure all lymphomas and providing patients and healthcare professionals with critical information on the disease.  LRF's mission is to eradicate lymphoma and serve those touched by the disease. This organization has provided more than $10 million for research and continues to fund some of the most cutting-edge efforts in finding a cure for lymphoma.  
The web address for Lymphoma Research Foundation is: http://www.lymphoma.org .

Lymphomation.org  is a large, well-organized patient support group for Non-Hodgkins Lymphoma. According to their mission statement, "We provide a helping hand by linking patients and caregivers to reputable evidence-based information, and voicing patient perspectives in the fight against non-Hodgkin's lymphomas." The affiliated online support group, NHL-Info, is hosted on Yahoo! Groups. There is much material of interest to CLL patients at these sites. 
The web address for Lymphomation.org is: http://www.lymphomation.org,
and that for the online support group is: http://www.groups.yahoo.com/group/nhl-info

The CLL Patient Database collects data about chronic lymphocytic leukemia (CLL) for use by patients, medical practitioners and researchers, and public and private sector decision makers. The ultimate goal is a cure for CLL. An interim goal is to help patients learn more about their disease by keeping and entering diagnostic data in the CLL PDB and by comparing their own data with a large number of other patients. A second goal is to provide medical researchers and practitioners with data useful in their search for effective treatments.
The web address is: http://patientdatabases.org.

Leukämie-Online.de is one of the largest online communities of leukemia patients in German-speaking countries. Among the major objectives of the group are patient education and the rapid  dissemination of information about new treatment options and the progress in research and therapies. Like CLL Topics, this organization has been launched and is run by volunteers and is entirely patient funded. The community was founded and its website created by Jan, a CML patient. Some articles from CLL Topics have been translated into German for publication on this website by Topics volunteer Roland Keilwerth.
The web address for Leuk
ämie-Online.de is: http://www.leukaemie-online.de.

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