Support Groups el pt

Information, Guidance & Education

Updated: September 10, 2024

by P. C. Venkat

Support for Patients and Caregivers

Here are a few online organizations that assist patients and families dealing with CLL and related diseases. These institutions and volunteer support groups are a godsend to the newly diagnosed patient or family member and a source of continuing strength for the battle-weary. Please note the presence of groups in Canada, the U. K. and Germany — in addition to those in the U. S.

Non-profit Agencies

There are probably governmental agencies in the area where you live with the charter mission of providing support to patients and families dealing with CLL and other cancers. How much practical help you can get from them is likely to be quite variable and dependent on your efforts to learn the ropes. However, there may also be charities and privately funded organizations that can offer help. Here are a few major ones. We will add additional entries when information becomes available to us.

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

Leukaemia Research Fund is a UK-based public charity established in 1960. It is dedicated to "improving treatments, finding cures and learning how to prevent leukaemia and the related blood disorders in both adults and children". Depending entirely on voluntary donations, the LRF annually commits over £20,000,000 to the support of research. It also publishes a line of patient education materials. Web address: http://www.lrf.org.uk

Lymphoma Research Foundation (LRF) is the largest lymphoma-focused voluntary health organization in the United States 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 .

Patient Run Volunteer Support Groups

Here are a few online volunteer groups that assist patients and families dealing with CLL and related diseases — and many of them are international in their scope. 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, swap war stories, 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: ACOR CLL List.

The CLL Information Group is a recently established patient organization that maintains a web site at http://www.cllinfogroup.org. The mission of the group is to provide disease-specific information to CLL patients and caregivers, to increase awareness about the disease, and to gain increased visibility in order to achieve greater support from the medical community. They also have a discussion group: cllsll@yahoogroups.com. This group is associated with the Lymphoma Research Foundation.

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: Yahoo CLL Research Group.

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.  Here is the address for the website: lymphomation.org, and that for the online support group is: NHL Info on Yahoo Groups.

NHL Cyberfamily  is a support group for NHL patients. The group is run by an NHL survivor, Greg Dafoe, who lives in Canada. It supports an informative website, nhlcyberfamily.org, and a very active, well-moderated discussion group hosted on Yahoo Groups, NHL. National boundaries are of little consequence in CLL or NHL: you might find your perfect match of helpful friends with this group. As with Lymphomation.org, there is much of interest at these sites to CLL patients.

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 that appeared in CLL Topics have been translated into German for publication on this website by Topics volunteer Roland Keilwerth. Here is the link to: leukaemie-online.de.

UK CLL Support Association is a community of leukemia patients in the United Kingdom. This group provides UK-specific support to patients and their care-givers. It is run by volunteers and conducts regular patient meetings, facilitates conferences with expert speakers, delivers literature through the hospital network and also has a web presence available to the public. This group has an interest in promoting targeted clinical research and does its own fundraising as a registered charity. The website is at: UK CLLSA.