Scope of organisation
CLL Support is a patient led UK charity. Our mission is to support and empower CLL patients, their families and their carers.
We hold regular meetings around the UK where patients and their supporters can meet other patients and hear about the latest developments in CLL treatment from the top clinical experts in the country. During the Covid-19 crisis, we have replaced our conferences with free video talks from clinical experts. We host a very active on-line forum (healthunlocked). Campaigning and advocacy is a major part of our activities. We speak on behalf of CLL patients to government bodies including the National Institute for Care and Health Excellence (NICE) to ensure that new treatments are available. We join with other charities to campaign for the recognition of leukaemia to be as important as other cancers for funding and research. We send a regular and informative email newsletter to members giving updates on our activities and also patient stories and produce informative booklets for newly diagnosed patients and various leaflets to help patients understand their condition. Last but not least, we operate a helpline that is staffed by volunteers, all of whom have personal experience of CLL either as patients or as partners of patients.
We are the patient charity arm of the UK CLL Forum ( UK CLL Specialists, clinicians, researchers and scientists). We work closely with Leukaemia Care, Lymphoma Action and Blood Cancer UK on areas from surveys, NICE applications, Webinars and Conferences.
CLL Support currently represents 3,000+ members or patients with CLL in UK and 15,000+ on worldwide Forum (information as of October 2020).
Support services offered and available resources
Information on COVID-19
- COVID-19 information hub
Services for HCP
Patient support services
Campaigning and Advocacy
- Advisory statements and position papers
- Awareness campaigns
- Health Technology Appraisals (HTA)
- Input in writing and/or in person to government and regulatory organizations
- Fundraising resources
- Personal Advocacy
- Surveys of the community served