This pinned post replaces our earlier reference post about sources of helpful information and support for those with CLL/SLL (hereafter referred to as CLL).
It is an open (unlocked) post, so those diagnosed with CLL can find our community.
It provides a useful, but not exhaustive, list of some good general information as well as some country-specific information and resources.
Many of the peak bodies listed here also offer other resources such as online and phone conferences, local meetings and regional and national forums.
Note that the views expressed on discussion group websites are those of individuals and not of CLL Support.
Also, remember that content provided on any website does not replace the relationship between you and your doctors or other healthcare professionals.
Because there is a 7000-character limit on posts, the information provided here is divided into five sections, presented as replies to this main pinned post.
Cancer Net has a Guide to Chronic Lymphocytic Leukemia that is regularly maintained and reviewed by experts, including physicians, nurses, patient advocates and others involved in cancer care, who are on the Cancer.Net Editorial Board.
INFORMATION & RESOURCES PROVIDED BY CLL SUPPORT & CLL SUPPORT AT HU
CLL Support is a patient-led charity in the UK that provides support services and a range of current and reliable resources written in patient-friendly and understandable language.
It encourages education whilst working for access to treatments that will improve CLL outcomes and it provides opportunities for awareness raising and mutual support, including the opportunity to meet at UK conferences several times each year. For more information about CLL Support resources and activities, visit:
CLL Support at HU (Health Unlocked) brings together a supportive international online community to allow those living with CLL/SLL and their family/carers to share their experiences. The group is supported by Admins, Volunteers and international information, resources and perspectives.
If you’re reading this, you’ve already found us. If you’re not a registered member, please consider opening a Health Unlocked account so you can join our community.
Apart from our own online community, another that is aligned with the Macmillan group is also a very social space for patients & carers where support and information are shared on many general topics in discussion threads:
clinicaltrials.gov/ is a database of privately and publicly funded clinical studies conducted around the world.
There are also some location-specific clinical trial databases; some are listed later in this post.
OTHER GLOBAL RESOURCES
CLL Advocates Network (CLLAN): “ . . . was founded in 2014 by representatives from Canada, Czech Republic, France, Ireland, Italy, Portugal, UK and the United States. It is hosted under the umbrella of the Leukaemia Patient Advocates Foundation [LePAF - lepaf.org/ ], a patient-led non-profit foundation based in Switzerland acting as a legal platform for self-sustained patient advocacy initiatives. The CLL Advocates Network is governed by a Steering Committee consisting of the 9 members, of whom 6 are patients and 1 is a carer.”
CLLAN also produces a ‘Resource Hub’ which features in Part 4 of this post.
Cll Global Research Foundation: The CLL Global Research Foundation (CLL Global) is “committed to accelerating progress towards the control of CLL and ultimately finding a cure for the disease as quickly as possible”
CLL Ireland is a patient-led advocacy group that aims “to ensure that anyone affected by CLL can gain access to the information, advice and support they need when they need it”
CLL Canada aims to "Advocate and provide education to improve access to health care that will extend the lives of Canadians affected by Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL)”
CLL Canada was formerly known as CLL PAG (Patient Advocacy Group). Chris Dwyer was a founding member of CLL PAG and also known to many here as “CLLCanada”, the most prolific of contributors to this forum, offering so much information and advice to this community and to the wider CLL community around the world. When Chris passed away CLL PAG received permission from his daughter to change its group name to CLL Canada. Chris's old website address cllcanada.ca now leads directly to cllcanada.org.
CLL Canada’s CLL Information and Resource Centre was launched on World CLL Day 2022. It uses the steps in the patient journey as a way to organise links to reliable CLL information sources on the Internet.
Leukemia & Lymphoma Society Canada is affiliated with The Leukemia & Lymphoma Society (LLS) in the United States. “While we are affiliated with LLS, we remain a separate entity and a registered charity in Canada that is focused on funding Canadian research and supporting Canadians in need as they go through their cancer experience.”
NCCN Patient Guidelines: “The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives.”
CLL Society is an “inclusive, patient-centric, physician-curated nonprofit organization that addresses the unmet needs of the chronic lymphocytic leukemia and small lymphocytic lymphoma (CLL/SLL) community through patient education, advocacy, support, and research.”
National Cancer Institute is the U.S. government’s principal agency for cancer research. Its central website, cancer.gov, "offers free, credible, and comprehensive information about cancer prevention and screening, diagnosis and treatment, research across the cancer spectrum, clinical trials, and news and links to other NCI websites”.
The information on this site is “science-based, authoritative, and up-to-date. Medical experts, cancer researchers, and editors review the content before it is published to the website”.
Patient Power is an online resource that includes video interviews with top CLL specialists and others with helpful input related to CLL from Andrew Schorr and others, and educational input from several sources such as Prof Susan Leclair about understanding your lab tests.
Leukemia & Lymphoma Society provides a wide range of information, services and resources including a CLL booklet for patients and CLL booklet for patients and caregivers (same basic information, but a bit more general) as well as other booklets which can be ordered in the US, read online, or downloaded. It also provides phone (in the US) and online advisors including advisors about clinical trials, and financial assistance. Important materials are available in English, Spanish, and French. LLS can also connect you one-to-one with an "experienced" CLL patient.
Cancer Care offers a variety of resources and advice - everything from financial aid to one on one phone support.The phone volunteers are very helpful.
CLLSLL@groups.io is a moderated group email based chat forum with member's medical questions answered by CLL specialist Dr Rick Furman. Your email address will appear with your post so other members can directly email you.
RESOURCES FOR AUSTRALIA, NZ & THE REST OF THE WORLD
AUSTRALIA
The CLL Optimal Care Pathway for those with CLL in Australia can be found on the Cancer Council website.
“The optimal care pathways describe the standard of care that should be available to all cancer patients treated in Australia. The pathways support patients and carers, health systems, health professionals and services, and encourage consistent optimal treatment and supportive care at each stage of a patient’s journey. Seven key principles underpin the guidance provided in the pathways: patient-centred care; safe and quality care; multidisciplinary care; supportive care; care coordination; communication; and research and clinical trials. This quick reference guide provides a summary of the Optimal care pathway for people with chronic lymphocytic leukaemia (CLL).”
To download a copy of the CLL Optimal Care Pathway document, use the link above, scroll down until you see ”Browse the Optimal Care Pathways” and select “Chronic Lymphocytic Leukaemia” from the list.
Leukaemia Foundation provides print and online resources for Australians living with CLL and for their carers and families. They also provide patient education activities and can provide support for some of the costs associated with CLL, especially with regard to travel and accommodation costs for rural and regional people needing to access metropolitan health services for their CLL.
Lymphoma Australia provides print and online resources, patient and carer education, and a National Lymphoma Nurse Support Line. Lymphoma Australia Nurses are “professional, qualified nurses who care for patients across Australia. These Lymphoma specialist nurses deliver an essential service to patients and cancer nurses. Lymphoma Australia nurses can help you navigate the lymphoma journey and connect you with others and the appropriate support networks”.
CLL Advocates NZ is a group of individuals affected by CLL and medical specialists active in the treatment of CLL who want to help CLL patients access world-class treatments. The organisation provides advocacy, support and information resources.
Leukaemia & Blood Cancer NZ supports those living with leukaemia and blood cancer and their carers and families through its core services of patient support, awareness, advocacy research and information.
The CLL Advocates Network (CLLAN) Resource Hub database provides links to organisations in many more countries than those listed in this post as well as to additional organisations for some of the countries already covered. Use it to find resources relevant to your part of the world.
Our knowledge about CLL has been expanding rapidly and many new treatments have become available, with many more in the pipeline.
CLL is a very heterogeneous disease. Although it’s the most common of adult leukemias, it’s still considered a rare disease and staying up to date with the rapidly changing diagnostic and treatment landscape for CLL can be a challenge.
To ensure that you are getting advice and treatment based on the latest knowledge and that you will have access to the most up-to-date testing, it’s recommended to have your care overseen by a CLL expert: a physician who mainly sees CLL patients and, ideally, is involved in clinical trials and research in the field.
Some patients, whose nearest CLL expert is located a long way away, coordinate their care between a local haematologist/oncologist and a CLL specialist whom they see less often and who oversees their care. Others see a CLL specialist for all of their CLL-related appointments.
There are many ways to find a CLL expert, including through discussion with your primary health provider. If you're having difficulty, the following resources offer some suggestions.
The CLL Society Expert Opinion Service
“There is well-documented evidence that having a CLL expert on your team improves your life expectancy. CLL Society’s innovative program offers a free consultation to [US] patients, providing them with an expert opinion to share with their local treatment team. We urge any patient to consider using this service when they are unsure of their disease status or their treatment plan.”
Note: These lists vary and may not include all the CLL specialists in your area. If you are seeking a specialist, check both lists and, If you can’t find someone near you, ask on our forum or seek information from your local CLL, Leukaemia or Lymphoma charity.
the CLL doctors list acor CLL is not up to date it lists a doctor who has died a few years ago . I can only say this for Germany but don’t know if this applies to other countries mentioned as well.
There are likely to be other errors, such as doctors moving clinics. You can feed back your correction by joining the ACOR list and sending an update message.
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