We are thrilled to share the latest findings from The Association of Cancer Patients in Finland Cancer and Work Survey 2023. Conducted in April-May 2023, this survey focuses on the experiences of working-age cancer survivors in Finland and provides valuable insights into their professional lives. The Cancer and Work Survey 2023 received an impressive 769 responses, offering a robust dataset that reflects the diverse experiences of cancer survivors in the Finnish workforce. The detailed results are available only in PDF format. Results in English and Finnish: English: www.syopapotila ..read more

We are proud to welcome a new member to our network! Please join us in welcoming The Brazilian Lymphoma and Leukemia Association (Abrale), our first member from Brazil! The Brazilian Lymphoma and Leukemia Association (Abrale) has the mission of offering help and mobilizing stakeholders, so that all people with cancer and blood diseases have access to the best treatment. Its structure is based on four main pillars: Patient Support, Public Policies & Advocacy, Education & Information, and Data Research & Monitoring. In this way, it is possible to have a broad view of health, which pe ..read more

Deborah’s journey with Chronic Lymphocytic Leukemia (CLL) began in 2004 when she received the life-altering diagnosis. Her story is one of resilience, advocacy, and unwavering commitment to improving the lives of CLL patients. As she embarks on her retirement, we take a moment to celebrate her remarkable contributions to the CLL community. Diagnosed with CLL in 2004, Deborah remains on Watch and Wait. She was told by her family doctor that she had the ‘good’ cancer and not to research on the internet. She became an advocate for CLL patients as a founding member of the Chronic Lymphocytic Leuke ..read more

We are excited to have Peter join our Steering Committee, and we look forward to moving the mission of CLLAN forward with Peter’s help. Peter joined CLL Advocates Network´s Steering Committee in October 2023. Unexpectedly diagnosed with CLL in 2019, Peter turned his public contribution attention to the CLL community. He is vice chair and treasurer of CLL Canada, an advocacy organization that provides education to improve access to health care that will aid Canadians affected by Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL). He has been active in growing the CLL Canada ..read more

We are excited to have Johannes join our Steering Committee, and we look forward to moving the mission of CLLAN forward with Johannes’s help. Johannes joined CLL Advocates Network´s Steering Committee in October 2023. He lives in Germany and was diagnosed with CLL in 2020. While on Watch & Wait the disease progressed quickly. In 2022 he started treatment within a clinical trial. After one year his CLL was MRD negative and he is since back on Watch & Wait. After having been active in various management positions in global IT companies for 35 years, Johannes´ patient advocacy career star ..read more

We are pleased to announce that the long-awaited Global Patient and Carer Experience Survey reports are now published and released on our website. In 2021, the CLL Advocates Network (CLLAN), Acute Leukemia Advocates Network (ALAN) and the CML Advocates Network (CMLAN) with the support of IQVIA as external provider, carried out a global leukemia patient experience survey. In parallel, the views of carers were collected in a global leukemia carer experience survey. The results of both surveys are now available in the full survey report and the executive summary. The report helps inform the CLL A ..read more

This survey is being run by the Acute Leukemia Advocates Network (ALAN), CLL Advocates Network (CLLAN) and CML Advocates Network (CMLAN). In 2021-2022, ALAN, CLLAN and CMLAN had ran the first global leukemia experience survey, collecting over 2600 responses from patients and 580 responses from carers around the world. Some results have been presented at conferences as abstracts and posters and we also used those data to shape the 2023 survey. The questionnaire is about diagnosis, care and treatment for leukemia. Its purpose is to provide information to help us understand the key issues, exp ..read more

CLL Advocates Network is excited to unveil the completion and release of the “Fast Facts for Patients – Chronic Lymphocytic Leukemia” booklet. The development of this booklet was a collaborative effort involving esteemed professionals and experts in the field of chronic lymphocytic leukemia (CLL). The steering committee member of CLLAN, Kathryn Huntley, joined forces with Professor Anna Schuh from the University of Oxford (UK) and Dr Alessandra Tedeschi from Grande Ospedale Metropolitano Niguarda (IT). The partnership also includes the contribution of Karger Publishing, an influential name in ..read more

We are pleased to announce that the long-awaited Survey Comparison Report “CLL patients and Carers: Unmet needs in Healthcare and Support” is now published and released on our website. The report provides a comparison analysis of some findings from three separate surveys conducted in 2021 and 2022 of individuals with CLL and their carers about their experiences, and with patient organisations from across the globe about CLL resources provided and unmet needs. The analysis was based on the results of the CLL Patient Advocacy and Support Survey (CLL-PAGS) conducted by CLLAN in 2021, the Global L ..read more

Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia (CLL) and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day (#WCLLD) we come together to improve understanding of the vulnerability of CLL patients and the challenges involved in living with CLL. The 2023 Campaign Toolkit will be available soon – there will again be lots of things you can do in the lead-up to the campaign, as well as joining us on the day! On this World CLL Day, under the hashtags #WCLLD23 #DontWalkAlone and #MentalHealth we focus on the menta ..read more