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.
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.
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.
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".
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.
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.
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.
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.
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.